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
