I know I've not been diligent with the blog in this new year and would like to explain why. It isn't that I've lost interest or become lazy. Rather, I am at a critical place with the muscle atrophy and considered my last post a good place to end or pause the blog. Awareness will always be a priority to me, which is why I keep telling my story. We all have a story and, if we share it, others are helped by it and still others are educated by it. Part of the reason I thought it was a good stopping point is it's hard to write with a FOCUS on the positive while you're grieving and, though I had future plans of making the blog into a book, I now feel a rush to complete so many things while I can still type. Hence, the blog book, as it stands now, is not very lengthy...but nonetheless equipped to encourage or educate. It's a quick read and lightweight. And I pray you'll consider buying it for yourself or anyone you know who needs encouragement. Likewise, the song or the first book. If what we go through can help others, it is not in vain. Thank you for your support, and God bless!
Friday, April 13, 2012
Friday, March 30, 2012
Muscles and Medicare
As many of you know, I have been bed bound for 16 months now. Initially, I was confined to bed with severe leg ulcers but, after 2 months, the muscles in my shoulder and hip atrophied…which then prevented me from getting up thereafter. Since then, my doctor and I have repeatedly tried to get (soft tissue) massage therapy and mild PT to slow down ensuing debilitation. Despite trying different nursing agencies, the answer remained the same; Medicare will not pay for it unless it will enable me to walk. That is their guideline; their “measurable goal”, and they need assurance of that outcome before covering the treatment/service. As the patient, my objective/“measurable goal” is to maintain movement in bed and slow down further debilitation.
Please understand that for 26 years I pushed myself to keep going and retain mobility through pain and limitations. It stands to reason I would continue that pursuit, albeit a lesser degree of mobility. I know the ramifications of immobility and wanted to circumvent those ramifications. Yet, without Medicare coverage or funds of my own, my hands were tied and the obvious has happened. I am now experiencing widespread atrophy of my muscles and tissue. I see my body wasting away before my very eyes. I don’t know how to express my dismay at this outcome or at the flaws in the system. Though I could well be called a crusader, I am not a revolutionary or activist. I am not able to speak before the Senate. I am, though, able to to raise awareness by telling my story in conjunction with everyone else’s story and hope that eventually change will come.
Friday, March 16, 2012
A Battle
To those of you who read this blog, I hope today’s post will speak to you somehow; that you could relate to it and feel less alone or less discouraged. This post is not about anything profound, just perspective of life with chronic illness. It’s not a journal or a how-to. Neither is it a solution. It’s just a personal study of where I am in the RSD marathon.
For those who have read my last two posts, you know the current challenge is depression. What, for me, used to be vent, re-focus and keep busy….suddenly became a fight that had me “down for the count”. Because my depression came from the loss of meds I had been on and because I don’t do well with meds, in general, I don’t want to experiment with new ones. Being tenacious, I would rather continue my attempts at re-acclimating myself to the former drugs; little by little, til I can again tolerate them…or maybe, God forbid, go without. For now, I have learned that this is a battle, and I have discovered some weapons of warfare. I listen to music more now, I watch funnier movies, I’ve re-connected with poetry, I now belong to a support group and I pray even more than before. In addition to all that, I cut my hair and resumed wearing lipstick…lol. These things, no matter how small or silly, are helping. I may not be where I want to be but I’m moving forward and that’s what counts. I know that some people have major depression that requires medicine and more, and my heart goes out to you. But the point I’m making is that this IS a battle and we need to be armed.
Love,
Jane
Monday, February 27, 2012
Newness
In my last post about two weeks ago, I was dealing with depression of my own and seeing so much sorrow throughout the RSD community, as well. Since that time, I have felt your prayers and support take the edge off my own circumstance and I have also seen some new and good things happening within the RSD community; things like the 2nd Annual Hope Over Pain CRPS/RSD Awareness & Research Cookbook get underway, the creation of an RSD comic book, the creation of a magazine, the one year anniversary of Joseph Aquilino's blogtalkradio shows and other awareness projects. To make a play on words, this gives me "hope over pain". Thanks for all your prayers and support. May we all experience grace in our circumstance. God bless.
Tuesday, February 14, 2012
I don't know if blogging at this time is a good idea as I'm not really in a positive state but there is always positive in anything, if we just shift our focus. So I will endeavor to do that, to shift my focus. I feel depressed right now, for many reasons. Partly, because I haven't gotten back on my meds since the sickness at the first of the year. I keep trying to but they are affecting me adversely, so I'm at a standstill, more-or-less. Also,I think I was unprepared for the progression of the disease and how encompassing it is.I think I've come to see that pain albeit horrific is just part of it. Trouble swallowing, vision loss, muscle atrophy and so much more are new dimensions to deal with. We are all capable of getting depressed, and facing these emotions head-on is actually healthy/therapeutic, but staying in the depression is not healthy.I see such despair in the pain community right now; much more than usual. And I'm here to ask that we would be earnestly praying for each other I know that I fare better when I look at the Lord instead of the circumstance. I pray that when we walk through the fire we would not be burned...Isaiah 43:2
Love to all who are fighting this battle.
Jane G.
Love to all who are fighting this battle.
Jane G.
Thursday, January 26, 2012
If Given A Choice
Anyone who has read my book in the blink of an eye, knows that I am homebound. And anyone who follows my blog knows I am now bed bound, as well.. With that said, let me tell you how fiercely independent I am .and why I think that’s a good thing. First of all, I can’t stand to be idle and second of all there’s too much work to be done. In addition I need to utilize my remaining abilities as long as I can. I may be confined to bed but I try to remain active to whatever degree possible…a thread that I see throughout the sick community; we’re all fighting to maintain whatever abilities we have left , along with our independence. I think it’s important to leave a mark on this world by giving back somehow and writing is all I have to give. Hopefully, the legacy I leave my family will include integrity, woman of faith and crusader for change.
Hence, the meaning of the title…If given a choice, I would do whatever it takes to protect my well-being and extend my usefulness.
Clearly, if I was not of sound mind, the choice would be lost but, until then, I revel in the grace of God and respect of loved ones. Despite the commonalities, RSD affects everyone differently and for me it holds extreme frailty, which makes ambulance rides and hospital visits WAY too risky. If a wrist can be permanently disabled from flipping a light switch, how much more dangerous is an ambulance ride or being pressed, pulled, prodded and moved without any warning? Knowing my body, I’m not willing to take these chances (if given a choice!).
At the start of the new year (2012), someone posed the question on Face book “What plans do you have in the new year to improve your situation? “ I’m not sure that’s verbatim, but it’s definitely the essence. Because fear is one of my shortcomings and I know it’s an area of my life that God is dealing with, my response was “to be braver”. And, while I knew that was an apt reply, I didn’t know what lie ahead or the depth of courage it would require.
On January 6th, 6 days into a new medicine,, I became VERY ILL and kept nothing down for the next week.. Along with nausea and vomiting. I realized I was impacted from constipation. That’s when I knew this was not something I ate. Rather, these were the side effects of the new drug I had started. I will not name the drug because the drug is not bad; it is, in fact, helping many people . Being hyper-sensitive to drugs, I hate trying anything new as, more often than not, the drug or the side effects will be a problem. The common side effects for this drug are constipation and nausea. Before proceeding, let me say that this subject is very personal and is only being shared in the hope of helping others. It turns out that the black liquid I was vomiting up was the contents of the small intestine due to the obstruction. I could see what it looked like but I couldn’t accept that it was really happening. I went into “denial”, telling myself it wasn’t possible (and stayed in denial). Being unable to keep anything down, I started drinking Pedialyte to restore electrolytes, and it gave me diarrhea which resolved the impaction and the vomiting then subsided. Later when a friend came to help me she told me that can happen with impaction. I called my nurse a few days later for her professional opinion and she confirmed what my friend said and felt that was exactly what had happened. Tomorrow my doctor is coming and I will see if he confirms the diagnosis; as I don‘t want to make any assumptions..
The vomiting was so bad that I couldn’t talk and, even if I could , my brain would not process such a thing…so it went unspoken.
Through this whole process, my daughter was my mainstay. She feared I could die (and I knew that was possible) but she also understood that the hospital and ambulance would surely injure me. Of course I, in this frail body, could weigh the possibility of death against the certainty of injury and refuse that risk. But she, not in this body somehow understood that calling 911 was not the solution. I cannot tell you what that meant to me. My doctor who I thought was on vacation because he wasn’t available for two weeks was really just booked. He typically makes every effort to keep me out of the hospital, as does my nurse…partly for the risk of injury and partly for the risk of MRSA. The caregiver, however, could not see beyond normal protocol and quit the job because I wouldn’t let her call 911.
Earlier, I said I kept nothing down for a week and that was literal; not water, popsicles, Pedialyte… nothing, until having a movement. Though I am no longer sick per se, it takes time to recover from that. I’m back to eating, but my stomach still feels heavy and crampy and it takes time to become regular again on your own . My daughter had scheduled a doctor appointment with a substitute but he never showed up Finally, today, I got to see my doctor who explained to me about vomiting up the contents of the small intestine that couldn‘t come out the normal way. I understand through him and Nurse Mandinec that although the small intestine contains colonic material it is different than the contents of the actual colon; as one is liquid and one would have form. In hindsight, I believe I went through a lot but also that I was spared a lot; in essence that God protected me.
Not only did my daughter take care of me while I was sick, she also dealt with the flood that occurred simultaneously; until my friend arrived to help. Yes, my ENTIRE apartment flooded and is now in a shambles Ironically, I‘m in the bed undisturbed, while caregivers and friends are laboring for me. What a feeling that is; gratitude, guilt, remorse (all of the above).
ServePro came in this week to assess the damage. They were scheduled last week but didn’t make it till this week when my best friend was here to help, which I consider providential My friend helped care for me and worked with the crew in moving furniture and re-locating essentials. She and another friend were a tremendous help to me. Likewise, some caregivers, Thus far, the work crew has removed all the carpet and all the baseboards and drilled holes in baseboard areas and set up fans and de-humidifiers to dry out the moisture. Fans and de-humidifiers had to be out a minimum of three days and have now been removed. And that‘s just the start! The work they expect to do is quite extensive. Fortunately, God is with me and His grace is sufficient. To some that may sound trite but, in reality, it’s very assuring. There were so many people praying for me and, in one case, my friend sat in a chair as proxy while her church prayed healing for me. I may not know the full impact of that till I get to Heaven but I know that kind of faith can move mountains. And I sob every time I think of such intercession for me!
Another grace/provision would be removing all the carpet without disturbing me in any way. The crew was sooooo considerate, they never even bumped me. And, though they thought they would have to move the bed in this process, I woke up the day the work was scheduled and realized God had already provided the solution through my adjustable bed. Raising up one end at a time would accommodate removal of the carpet. And it did! (all but a 1” strip from side to side) It took a willingness on the part of the crew, but God brought it all together. At times like that, you see that He sent the provision before you even knew of the need.
Though I am mortified to be so open and public about something so private, I sincerely hope it will help someone else just through being informed.
I enjoy my life.and, God knows, I love my family but my becoming bed bound was caused by poor treatment of a nurse; and the thought of losing more ability from rough or poor treatment is too disheartening for me. I trust God with my life and if He takes me to be with Him in Heaven, that is a far greater glory than living with additional pain and limitation . I live my life to the fullest but when my time here is up, I will be in a better place. I know that there are different beliefs but, because I believe in the saving power of Jesus Christ, I don’t have to fear death. It’s really that simple.
In the writing of this story, I was very conflicted and actually wrote/re-wrote the story 3 times. At times like that, you question “Is this story not meant to be told or is it under attack for the good to be blocked?” I pray that it was in fact meant to be told and will be used for good.
Blessings,
Jane
Hence, the meaning of the title…If given a choice, I would do whatever it takes to protect my well-being and extend my usefulness.
Clearly, if I was not of sound mind, the choice would be lost but, until then, I revel in the grace of God and respect of loved ones. Despite the commonalities, RSD affects everyone differently and for me it holds extreme frailty, which makes ambulance rides and hospital visits WAY too risky. If a wrist can be permanently disabled from flipping a light switch, how much more dangerous is an ambulance ride or being pressed, pulled, prodded and moved without any warning? Knowing my body, I’m not willing to take these chances (if given a choice!).
At the start of the new year (2012), someone posed the question on Face book “What plans do you have in the new year to improve your situation? “ I’m not sure that’s verbatim, but it’s definitely the essence. Because fear is one of my shortcomings and I know it’s an area of my life that God is dealing with, my response was “to be braver”. And, while I knew that was an apt reply, I didn’t know what lie ahead or the depth of courage it would require.
On January 6th, 6 days into a new medicine,, I became VERY ILL and kept nothing down for the next week.. Along with nausea and vomiting. I realized I was impacted from constipation. That’s when I knew this was not something I ate. Rather, these were the side effects of the new drug I had started. I will not name the drug because the drug is not bad; it is, in fact, helping many people . Being hyper-sensitive to drugs, I hate trying anything new as, more often than not, the drug or the side effects will be a problem. The common side effects for this drug are constipation and nausea. Before proceeding, let me say that this subject is very personal and is only being shared in the hope of helping others. It turns out that the black liquid I was vomiting up was the contents of the small intestine due to the obstruction. I could see what it looked like but I couldn’t accept that it was really happening. I went into “denial”, telling myself it wasn’t possible (and stayed in denial). Being unable to keep anything down, I started drinking Pedialyte to restore electrolytes, and it gave me diarrhea which resolved the impaction and the vomiting then subsided. Later when a friend came to help me she told me that can happen with impaction. I called my nurse a few days later for her professional opinion and she confirmed what my friend said and felt that was exactly what had happened. Tomorrow my doctor is coming and I will see if he confirms the diagnosis; as I don‘t want to make any assumptions..
The vomiting was so bad that I couldn’t talk and, even if I could , my brain would not process such a thing…so it went unspoken.
Through this whole process, my daughter was my mainstay. She feared I could die (and I knew that was possible) but she also understood that the hospital and ambulance would surely injure me. Of course I, in this frail body, could weigh the possibility of death against the certainty of injury and refuse that risk. But she, not in this body somehow understood that calling 911 was not the solution. I cannot tell you what that meant to me. My doctor who I thought was on vacation because he wasn’t available for two weeks was really just booked. He typically makes every effort to keep me out of the hospital, as does my nurse…partly for the risk of injury and partly for the risk of MRSA. The caregiver, however, could not see beyond normal protocol and quit the job because I wouldn’t let her call 911.
Earlier, I said I kept nothing down for a week and that was literal; not water, popsicles, Pedialyte… nothing, until having a movement. Though I am no longer sick per se, it takes time to recover from that. I’m back to eating, but my stomach still feels heavy and crampy and it takes time to become regular again on your own . My daughter had scheduled a doctor appointment with a substitute but he never showed up Finally, today, I got to see my doctor who explained to me about vomiting up the contents of the small intestine that couldn‘t come out the normal way. I understand through him and Nurse Mandinec that although the small intestine contains colonic material it is different than the contents of the actual colon; as one is liquid and one would have form. In hindsight, I believe I went through a lot but also that I was spared a lot; in essence that God protected me.
Not only did my daughter take care of me while I was sick, she also dealt with the flood that occurred simultaneously; until my friend arrived to help. Yes, my ENTIRE apartment flooded and is now in a shambles Ironically, I‘m in the bed undisturbed, while caregivers and friends are laboring for me. What a feeling that is; gratitude, guilt, remorse (all of the above).
ServePro came in this week to assess the damage. They were scheduled last week but didn’t make it till this week when my best friend was here to help, which I consider providential My friend helped care for me and worked with the crew in moving furniture and re-locating essentials. She and another friend were a tremendous help to me. Likewise, some caregivers, Thus far, the work crew has removed all the carpet and all the baseboards and drilled holes in baseboard areas and set up fans and de-humidifiers to dry out the moisture. Fans and de-humidifiers had to be out a minimum of three days and have now been removed. And that‘s just the start! The work they expect to do is quite extensive. Fortunately, God is with me and His grace is sufficient. To some that may sound trite but, in reality, it’s very assuring. There were so many people praying for me and, in one case, my friend sat in a chair as proxy while her church prayed healing for me. I may not know the full impact of that till I get to Heaven but I know that kind of faith can move mountains. And I sob every time I think of such intercession for me!
Another grace/provision would be removing all the carpet without disturbing me in any way. The crew was sooooo considerate, they never even bumped me. And, though they thought they would have to move the bed in this process, I woke up the day the work was scheduled and realized God had already provided the solution through my adjustable bed. Raising up one end at a time would accommodate removal of the carpet. And it did! (all but a 1” strip from side to side) It took a willingness on the part of the crew, but God brought it all together. At times like that, you see that He sent the provision before you even knew of the need.
Though I am mortified to be so open and public about something so private, I sincerely hope it will help someone else just through being informed.
I enjoy my life.and, God knows, I love my family but my becoming bed bound was caused by poor treatment of a nurse; and the thought of losing more ability from rough or poor treatment is too disheartening for me. I trust God with my life and if He takes me to be with Him in Heaven, that is a far greater glory than living with additional pain and limitation . I live my life to the fullest but when my time here is up, I will be in a better place. I know that there are different beliefs but, because I believe in the saving power of Jesus Christ, I don’t have to fear death. It’s really that simple.
In the writing of this story, I was very conflicted and actually wrote/re-wrote the story 3 times. At times like that, you question “Is this story not meant to be told or is it under attack for the good to be blocked?” I pray that it was in fact meant to be told and will be used for good.
Blessings,
Jane
Monday, January 2, 2012
2011 - The Year In Review
Though I'm writing this a little bit late, it's only fitting to ring out the old and ring in the new. I don't want to say that 2011 was a bad year, but it was a hard year for me due to worsening health. On top of that, I was plagued with computer problems most of the year and I lost a couple of dear friends, which breaks my heart. But, on the flip side, I got a new grandson and some family members came for a visit from overseas. I wrote/produced a song about RSD and was blessed in many ways throughout the year. The RSD community reached new heights in 2011 through the dedication of so many who tirelessly employed their gifts and abilities. Now it is a new year with new experiences and new opportunities, new challenges and avenues for growth. I think awareness of RSD was raised significantly in 2011 and will continue doing so with increased momentum. We can't and won't stop until a cure is found.
My prayer for us all in 2012 is:
May the Lord make His face to shine upon us
May He answer all our prayers
May He lead us in triumphal procession
When on Him we cast our cares
Copyright Mary Jane Gonzales
My prayer for us all in 2012 is:
May the Lord make His face to shine upon us
May He answer all our prayers
May He lead us in triumphal procession
When on Him we cast our cares
Copyright Mary Jane Gonzales
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