The New Life of a Chronic Pain
Reversal of Life
Once a chronic pain patient becomes disabled for any given reason, it seems their life takes a turn for the worst and are treated as second class (pardon the phrase) citizens. No one should be maligned in this fashion. We must be treated with respect, not frowned upon and withheld from proper assessment.
The majority of chronic pain patients have worked more than half their lives and once they lose most of what they considered “taken for granted” previously, would now be looked upon as a blessing. When one has no choice but to survive on a disability pension after and almost 27 years of full-time employment, some frivolous luxuries as dental, extended medical coverage ie:
prescriptions, eye glasses, etc., etc. are now placed on the back burner. We had no part in asking to survive on less than 1/4 - 1/3 what was normally considered “just getting by” in only a few years. When certain medications are prescribed and the prescription plan does not cover it, you make
the choice, suffer daily without it, or just relinquish some little extras in trade for pain relief to reach the end of the day.
Why doesn’t the provincial or federal government provide more RX plans and coverage ie: more choices? Yes, one may possess everything they’ve always wanted most of their life and in a split second their lives can be turned upside down. Next, some friends do not consider you in their class any longer. Most of the time we continue our research and talk to others regarding our disabilities. At least we have that in common. Doctors, family and friends lack the desire to listen or understand concerning the new life which has been chosen or bestowed on us. We did not request such changes. No one other than our fellow CPPer’s listen to our pleas for help, understanding, compassion, every day dilemmas and constant (unwanted) pain which is sometimes our only companion. Family and friends cannot justify why someone in constant pain may have mood swings and/or suffer in silence.
We continue to “beg” for help to end some of the pain, but are ignored and shuffled around like paperwork, a number and not a human being with yes, feelings. Many of us shed tears when no one is in attendance as a form of release. We pray to God as a pillar for strength, and not spotlight on “why me”? When our bodies cry out in pain, we are the only ones in attendance to listen even if we choose not to. The pain is too deafening to turn one’s back or ignore.
We have been more productive for others who suffer daily, but find it too difficult to be productive financially as we were in the past. The continual unrelenting pain will not allow us at the best of times to persue or allow a new profession. We are not reimbursed for supporting , encouraging and understanding others in similar circumstances. Being there personally or in spirit for those who may require and need our assistance is at best all that is shared.
Some doctors, lawyers, government and medical agencies are far too busy to take the time with a courteous response to many letters written in pain for yet another plea for help, no matter the cause. Tears are not the answers to anything although will not subside until we are treated more humanely and with respect. They are only our true feelings surfacing. Sympathy, pity or empathy is not summoned, but rather progress, competence, understanding and proper treatment is our request. Turning a blind eye or a deaf ear is not the answer to our much-needed care. Education and proper diagnostics is the key to earlier and possible treatment. Patients seem to be continually updated on their chronic conditions. Either it is due to our interest in proper care or seeking, longing and willing to keep our doctors informed on up-to-date documentation pertaining to our conditions.
Those who truly relate to our never-ending pain will always be there when we need a hand, a shoulder or guidance after our dedicated work is not recognized or responded to. They will show compassion, friendship, loyalty and trust. Faithful friends will not turn their backs on one another when one asks for understanding and help in some form or another. CPPer’s make lasting friends among their own groups. Most often new friends may replace our old ones who after many years exhibited interest during our healthy days, but showed little interest when our disabilities drained most of the old life from us. The same person cannot be returned to them so they do not wish to know how to deal with this problem. On the other hand CPPer’s will in most cases always try to understand. CPPer’s and people living in some form of chronic pain understand as I wish most were able. No one can relate until they are in this situation. I myself did not realize many afflictions would transpire at some point in my life. Only physicians who live with chronic pain understand and want to help their patients as do some who at least take the time to learn more about chronic pain and how it affects ones daily living. Due to improper care and lack of treatment, our quality of life is removed from us along with our dignity and self-respect.
Following is an example of what may be expected of us to secure further treatment. Other times, it only displays disappointments. Many calls, appointments and letters accummulated during the summer and fall of 1999 as a way to secure medical assistance.
1. Contacted the Nurses’ Registry on numerous occasions. According to them, a number of doctor’s names should NOT have been on their list and had not ONE doctor to refer anyone to.
2. Contacted and wrote the Ontario College of Physicians and Surgeons numerous times....too many to remember.
3. Called a pain specialist in Chicago for referral. Their office originally referred me to the Rothbart Pain Clinic in Toronto in 1998.
4. Called St. Lukes Hospital in Duluth, MN., and received information in the mail on their pain management program. Was unable to have the proper paperwork completed beforehand so could not attend the clinic.
5. Called my lawyer many times concerning lack of proper medical treatment.
6. Kept appointment with a local Member of Parliament which did not work out as planned.
7. Called our local Physicians representative which was suggested by the Ontario College of Phys. & Surgeons without success.
8. I was passed onto the Chief of Staff at one of our local hospitals. He could not assist in any of my requests for help either.
9. Visited emergency on several occasions.
10. Visited one of our walk-in clinics numerous times.
11. Was passed onto and spoke to the office for the Coordinator of Physicians at one of our hospitals who only suggested to keep calling the Nurses Registry.
12. Called a pain specialist in Toronto who was not able to assist me long distance. My last visit to that pain clinic was March/98.
13. Wrote the Minister of Health on two occasions.
14. Wrote and spoke to the Ontario College of Physicians on several occasions.
15. Wrote a law specialist in Ottawa for any further advice concerning many issues. No response from his office.
16. Called local clinics asking if ANY doctor was taking a new patient without success.
17. Asked certain doctors at a walk-in clinic if anyone in the city is taking a patient to no avail.
18. Asked doctors in ER same as 17 to no avail.
19. Waited 2 months to be turned down, sight unseen by a new doctor who arrived in the city and refused many patients at the same time, especially if they had a family doctor at the present time. I was still was turned down.
20. Member of my former active pain group wrote to certain government agencies in Canada on my behalf. This letter was passed along and included with a few of my compositions to other agencies.
21. Left many messages with the Ont. College of Physicians. Two staff workers returned my calls, but still could not help in the least. I also wanted to speak to the “Chronic Pain Task Force” but was told they are never available for comments or questions.
22. Have been told by all clinics and doctors in this city that no one is taking a patient even if they had a “former” doctor.
23. Attempted calling the Ontario Medical Association who stated they could NOT help me either as suggested by the “intake” office for Quality Management at the Ontario College.
24. I attempted to reach someone at the Ministry of Health for assistance, also to no avail.
25. Contacted the local office of the Ontario College of Phys. & Surgeons and again was passed onto the provincial office to no avail many times.
My letters and telephone calls did not stop there, but after 7 months of advocacy for myself and others in this city, I was once again placed on the back burner and/or forgotten.
After all that was endured and attempted above, it still appears as if I’m very much up against a brick wall and have exhausted all attempts to find care and concern from our so-called medical community to allow me to at least live a better quality of life. That has certainly been taken away quite some time ago. I have no idea when I’ll gain or be rewarded a proper existence again.
As I criticized in the past, “when will our doctors stop practicing antiquated and Neanderthal medicine and start living in the present?” Obviously this has been my fate and it has become extremely difficult for my conditions to reverse themselves. I know living this form of life has its disadvantages, but at least I wish to live with it in less pain. Doctors have the means to alleviate intractable pain, but are always hesitant to accommodate. I stated before if one is to attempt to help others in such crippling conditions, that person needs all the medical attention necessary for survival. The cards may have been dealt this way and I only ask for some compensation for all my efforts. I’ve stated on many occasions, “why should I have to look outside the way I feel inside, even though it is a mask to cover up the pain”. Even now that same mask has failed adherence and the pain is becoming too difficult to camouflage.
Jan. 17th, 2000
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