My writing or post today was going to be about “bullying” and even “online bullying”. But I wanted to share something with you that I received in an email recently. Someone asked me to write for their friends magazine. I was pretty excited and so I sent my past article about “Living Beyond your Pain” and she liked it. But then she read another article and went to this blog and said that it was “depressing” and full of “no hope”. Well, I needed some time to think about, comprehend and Digest everything that she said in her last note. First of all, throughout her whole entire “put down” of my writings, she referred to “Opioids” as “Antibiotics”. There is a real difference there. Now we all make “auto correct” mistakes, but because the very long email was talking about how “I take Antibiotics” and how they are “so bad for your body” and she added that I should try “to brush or think the pain away instead of taking Antibiotics“. I don’t take “antibiotics”, I take “opioids” for non-malignant chronic nerve pain. She went on to tell me what I feel, by stating that I “want bigger and better drugs” or “we all do”. This is what I told her:
“We don’t need “bigger and better drugs” we sometimes just need “different” medications for the various Chronic Pain Illnesses. Some chronic pain, and/or invisible diseases were found long-ago but have no cure. Others, haven’t had enough research done with them; therefore no medications are available for those exact diseases…Yet!
The problem out there today is that people who don’t live with the kind of chronic nerve pain that is # 43 on the “McGill pain scale”. The kind of chronic pain which is 24/7 & 365 days per year. The kind that leaves you feeling like you’re “on fire” but also as though you’re an “ice cube on fire”. Those people don’t understand nor can they comprehend this sort of pain. They only see the abuse of the Opioids, not the use for them! Believe me when I say, that without this medicine, I’d not be able to be the kind of wife, mother or grandmother I am being. Therefore, in some chronic paint patients lives, such as in mine; these medications do “save the day”! *(She had made a reference to the fact that we think our Opioids “save the day”)
We live in a world where many people are confused between the words “addiction” “tolerance” and “dependence”. A heroin addict is “addicted” to their drug of choice. A person living with chronic pain, who takes Opioids on a daily basis, will be physiologically “dependent” on the pain meds. This is involuntary and there are no “cravings” or “addiction”. Our bodies may become “tolerant” to the medications as well. Normally the Pain management physician will titrate the medications until there is a more livable pain level. As my PM Dr. Said to me “With all of the high pain issues that you have, I cannot ever take away your pain. But I will try to make you more comfortable.” Chronic pain patients, like me, who live every day with CRPS (*A Neuro-autoimmune disease with continuous nonmalignant Chronic nerve Pain) and several other chronic pain illnesses, feel very stressed when we hear that our Opioid pain medications are being compared to street drugs such as heroin & we are then compared to the “addicted” heroin user!
I will make an “I” statement when I say that I am disabled, on SSDI & just seeking some semblance of a “normal “life with any kind of quality on a daily basis. If only for a few hours per day.” This is what I said to her and then I decided to explain to her the diagnosis’ that I do suffer with. I thought it would give her an understanding or a better empathetic or more compassionate view. This is what I said:
“This next section will be overwhelming for you to read but not as much as it is for me to battle on a daily basis. I suffer with: a TBI s/p a M VA and PTSD from years of abuse. I have CRPS (systemic/Full Body), Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease, Coronary Spasms (aka: Prinzmetal Angina) Dysautonomia/POTS, Rheumatoid Arthritis, Osteoarthritis,Degenerative disc disease with multiple herniated & bulging Lumbar & Cervical disc’s, Radiculopathy & Arnold-Chiari malformation I. I suffered a heart attack in 2005 and then a CVA or stroke in 2006.
I live with the remnants of weakness from the stroke and nerve pain; as well as right side Long thoracic Nerve Neuropathy with Winged Scapula. The heart attack left me with Atrial fibrillation. I have Eczema secondary to the CRPS as well as GERD, IBS & Gastroparesis. These are just the painful and nerve illnesses that I have and live with every day. This list does not include all of the other health related issues that go along with some of these illnesses. I have a pacemaker with a cardio Messenger box & I suffer from CAD (which runs in my family). Lastly, I have “Combined Immune Deficiency disease which prevents me from being a candidate for pain pump or a spinal cord stimulator! There’s more, but I’ll spare you, as I’m sure you are getting the picture? There’s no cure and it’s not looking very good for one.
I don’t get my “drugs off the street”; but in fact, I get my pain medicine from a very qualified Interventional Pain Management Physician.
If a chronic pain patient could simply “unthink or brush away” their pain; then CRPS would no longer be called the “suicide disease”. If people could just eat properly, exercise, & take more vitamins to make the constant daily nerve pain disappear, then they would and it would be disappearing! But it’s not!” She then made a reference to “back in the 1800’s people used to do this and that for pain…” . Well, I say that back in those days people had their babies in a field somewhere or in their homes and many mothers and babies passed away. There were no C-sections for breech births and so on…So….
I say “Thank God” for progression since the 1800’s! There’d be no penicillin, no pacemakers and all of the other many advances in medicine! In fact without these advances, we might not even be here because there were so many deaths in childbirth and infancy & from diseases which now have a cure!
After all of that, she next made a reference to how I must have “felt so dependent when my PCP left Dec of ’15.” Well, I explained it this way: “When my Primary Care Physician left suddenly after 12 years, I was afraid at first. But rather than that fear making me feel “dependent”, it made the survivor in me come out once again. I felt strong and empowered when I was forced to stop taking the “bad” medications that he had me taking for 12 years!” I found out the truth about my ex- PCP. He was a bad Dr.,& he fooled many! It is a blessing in disguise that he left when he did. I was told by my old pain Dr (I’ve only had 2), and by the PCP who was in the same office as my ex-PCP; that they were going to refer me to a “treatment center” to get me off those medications that the other doctor had me on for so long.
I have never taken drugs. I did not drink alcohol not did I smoke anything! There was no way that I was going to go to any kind of treatment center! I was not going to have that in my records following me around; when I had never done anything “bad” in my lifetime to deserve that. Therefore, I did it myself in three weeks with the help of my loving husband. I was off of those pain meds in 3 weeks time and never once “craved” it! I have not wanted it again, but my body did get sick and I went through physical withdrawals! It was a hard and horrible time. A time that I’m glad is over!
When this person mentioned that my blog, this one; was “depressing and Hopeless”, it made me sad for a moment. But then I remembered all of the nice comments that I’ve received and how many people have told me that I was an inspiration and gave them hope. So this was my response to those words: “Lastly, I’d like to add that you’re the only person ever to date, that sees my blog “Tears of Truth” as sad and “hopeless”! I’ve been told by many, including my Psychologist & now friend of 15 years, that it is full of great hope, inspiration, truth and it is the writings of a true survivor. One who could’ve been dead or ended up crazy for all of the things endured!
My blog has some truth & sadness; yes…but anyone who reads it, sees a progression of Hope and survival. There’s a lot of great information for people to take with them when they “visit”,as well! There’s truly a couple of “rants”but if you truly read it, you will see many more informational & uplifting posts, than said “rants”!” Most of the “sad/bad life history and abuse “stuff” was written in the beginning. It was before this blog took off in its own direction to give information, hope and stories to people, in order to help and pass along information. Those posts are mostly now “private” and if someone wishes to read them, they just need to email me or send me their email here in the comments and then they can read the private posts if they choose at their leisure.
Next, I wrote an “about me” section. It wasn’t for any kind of “bragging” because I’m not like that in any way. But I wanted her to see that I am Positive and I do try to give hope and that I’m not sucking the life and hope out of anyone. I explained how I’ve been an advocate/activist since 2005. I have gotten House Resolution #267 passed in the Michigan House of Representatives. I got that passed in 2013 to make “November” the official CRPS Awareness month in Michigan. It was done to help make more people and more doctors at least in the state of MI, aware of all the complications of CRPS.
I have held fundraisers and awareness events. I have several fundraisers & events on social media right now!(**ASK ME about the #wearthemsharethem event going on right now for CRPS! It’s going to blast Twitter with that hashtag as long as I can send out the info and awareness ribbons). I have also held awareness events at the universities. I have raised money for children who have CRPS to go to Summer camp (**Ask me about RSDSA and the Penney PIG?) . I am & have been a mentor for RSDHOPE and RSDSA since 2007. I have three support groups which I am the sole administrator! These support groups have over 800 people that I’ve been trying to help since 2007. I’ve been arranging support group “meet ups” in Michigan, to get people with different pain illnesses together to support each other and make friends. It gets them out of the house. I’m also an Ambassador for for the US pain foundation and have been a guest writer/blogger for the Painnewsnetwork magazine (online magazine). Lastly, RSDHOPE and RSDSA post my blog articles on their websites quite often.
One more thing that I’ve been doing since 2005, is that I am a chemo-angel, Prayer angel, special assignment Angel, and card angel for the chemo-angels program. I write letters and send small gifts to people I am assigned to do so through their program. It is for children & adults with cancer and who going through chemotherapy. I do not ask for anything in return. I do it because I like doing it I want to help people. So I don’t see anything “doom & gloom” about my life or my blog? Lastly,regarding that letter, I added that in 2013 I had been nominated and was a runner up for the “unsung hero award” via WEGO health. I have been in my cities newspaper several times and I’ve been nominated for several other awards for the volunteer work that I do and have been doing. I don’t only do this for pain, illnesses and CRPS. I enjoy doing it for Cancer patients and I enjoy helping and loving all kinds of people and especially children.
Anyways, I’ve changed my blog post today from one about “bullying”, which I can save for another time. I think it might help many people who have been hurt or who may be hurt in the future. This post turned out to be more of a lesson in trying to understand someone elses situation before just “assuming” all of the bad things. It also reminds me to be sure of what I’m talking about when I’m actually putting someone else down. Though I don’t think I will need that lesson, because I don’t usually put other people down. Even today, I saw this as not a way to be mean or vindictive, because I mentioned no names and no references to who this could possibly be. I used it as a tool to show that there is more than one way to see something. Also, don’t rush to judgement on someone before you get to know them, give them and their ideas a chance!
“When you think yours is the only true path you forever chain yourself to judging others and narrow the vision of God. The road to righteousness and arrogance is a parallel road that can intersect each other several times throughout a person’s life. It’s often hard to recognize one road from another. What makes them different is the road to righteousness is paved with the love of humanity. The road to arrogance is paved with the love of self.”
― Shannon L. Alder