Keeping Hope Alive is Tough!


You never think it will happen to you, until it does. I have been helping others and advocating for them for many years now. I have been writing for the National Pain Report and in my own blog (tearsoftruth.com) for several years as well. I try to give advice to others to help keep their hope alive. On my WEGO Health profile, my favorite words are posted. These are words that I try to live by and a phrase that originated with me, “Hope is a verb, You have to DO something in order to have it”. Now I have to practice what I have been preaching.

I think most of you know that in March 2018, I visited my pain Dr. And he did the usual random urine test. I was told in April that it showed a positive for PCP and something else, I cant even think of right now? Probably because I have no idea what these are and did not ever take them. It ended up being a “false positive” after we were charge $300.00, because HE forgot that I was taking a migraine medication that did not show up on the MAPS. He says it shows up sometimes, not others?

My PTSD symptoms have gotten worse prior to each upcoming pain Dr. visit. He has become less respectful towards me. I used to feel a mutual respect between us. I stopped taking some other cancer pain medication that was prescribed to me before I started seeing him in 2015. I felt that he respected me for being able to do that and go through the withdrawals process. My brain did not ever care about the medication, but my body got very sick when I stopped it.

The past few appointments I have not felt that respect that I had felt in the past. My Dr. was treating me differently. He got angry if I got weepy at all and he yelled at me for crying. Something changed in him and I could see it and feel it, but I was not sure what it was or why it was happening? This week I went to my appointment on Monday, 7-9-18. Things were pretty “normal” during the visit, but he was kind of “short” and “quick” with me, when he used to chit chat a bit and even smile when he told me about his children. At the end of the visit, he said this to me “so we are stopping your Fentanyl patch”. I was stunned because I’ve been on it for 15 yrs and taking less now than I was in 2015. I’ve had some semblance of a life with my husband, kids and grandchildren. I’ve been doing quite well and now he was taking away something that I’ve been doing very well with. Then came the “big lie”; (*which I know is untrue because I asked my Neurologist and Cardiologist and I was told it was not true whatsoever). He told me that I was “probably not getting more than 30% of the medication anyways because I’m not “fat” or “heavy enough”. That the fentanyl patch works better on “fat/heavy people” or “people with more body fat than I have”.” I questioned him, but I knew enough not to question him too much. I did not want to make the person that I depend on to have some kind of life at all, angry with me. My husband brought the empty bottle of my Migraine medicine to show him that I did have an 8 month old script and recently got a new refill. It was not showing up in the MAPS and my husband asked him if we should ask the pharmacy to make sure it is in that system? He told us that “they don’t like if you know too much, its best not to say anything”. What the heck is that all about? We are supposed to be lambs/sheep and follow orders and jump off the cliff if told to do so, without ever asking any questions? I’ve always found it better to be knowledgeable in my own treatment and healthcare. But this is not the case today, I guess?

Lastly, I put myself into old “abuse mode”. It was the same as the “old days” and I put myself in another place, disassociated until we could get the hell out of that room. All I wanted to do is cry and be hysterical for a few moments with the one person who loves me and who protects me to the best of his abilities and who is my soul-mate, my husband. I heard him tell me that he was taking away my patch and that I could take a different extended release medication “MS Contin”. But, I told him that I am unable to take that medication because I have Gastroparesis and even before I was diagnosed with GP, I could not take that medication because it made me sick, violently ill. That was the only choice I had and he gave me “one more month to be psychologically ready” but my dose was lowered and spread out for another full day. In one month I will be taken off of my patch after 15 years, with no tapering and nothing that matches the strength and pain lowering levels of what has worked for me for so long.

We are now at the mercy of the government in our patient rooms. He says that the state and federal government are making him do this to me. But there is no “law” that I can find in Michigan yet, stating that all persons taking Fentanyl for chronic pain must be removed from taking it now. I’m sorry that I don’t believe that you must be “heavy person” in order for the Fentanyl to work, because I was pretty much anorexic when I started it and it’s always worked for my pain. I have never had a “high” or any feelings except some relief from the pain of the several high pain illnesses that I live with and have lived with for many years. He also told me that “only those who have cancer are allowed to have these fentanyl patches now”. There is no evidence to prove that cancer pain is any worse than the pain that many of the chronic pain patients have to endure. I know there is a NORD website quote or a quote from the AMA, regarding this but I’m too sick right now to try and find it for you, I apologize. It’s easy to give advice, hope and love to people going through this, but when it is YOU who is going through it, all the love, advice and hope won’t make it better.

The same day that this happened, I awoke at 4:00 am with a feeling like someone was pressing on my left eye. When I opened my eyes, I could not see out of my left eye at all. It was totally pitch black. After a few minutes of screaming hysterically and my husband rushing to my side, I started to see patches of light in a dark mass. Then patches of the living room came into focus. After about 5-10 minutes, I could see again but not as sharp as usual with my glasses on. I went to sleep and in the morning I had a dull ache in my left eye and went to the hospital’s eye clinic that day. The Dr. Said that I had a “mini stroke” or “TIA of the eye”. My blood pressure had been high at the pain Dr. Appointment and my heart rate was 100 bpm before he even came into the room to tell me the news. He told me it was probably from stress and nothing they could do for me after all of the special testing that they did, they sent me home. I visited my heart specialist the next day and filled him in. He concurred with the eye clinic and said it could even have been an Ocular Migraine, but either/or both are from stress and can be a dangerous precursor to a stroke. I had a CVA or stroke in 2006, so I’ve been there and done that already. Today, we are like lambs going off to slaughter and nobody cares if we live or die. As my kind-hearted specialist physician of 15 years told me yesterday, “unfortunately you and people like you are collateral damage to the hysteria taking place right now”. I guess now it is up to me to see if I am able to follow any of the advice that I’ve been giving to others in this same predicament? Will I have another heart attack or another stroke because the legislators don’t care about me as an individual? Will I live to see my granddaughters and new grandson’s lives evolve or will I be a statistic? I guess only time will tell and all I can do is try to “keep hope alive”.

9 thoughts on “Keeping Hope Alive is Tough!

  1. Hi Suzanne. Just wondering how you are doing? By the way, I too live in MI. Certainly not bragging. I have never heard anything about fentanyl working better on heavy people. I had previously worked in oncology but it’s been over 10 years. It blows me away how these ‘professionals’ make things up & we’re all supposed to be dumb & believe it. I too suffer from extreme anxiety just by having to beg for proper treatment from a physician. As my anxiety gets stronger because of all the stress that I have to deal with, the less empathy these care givers have. I’m tired of fighting. I can tell that you are too. Many blessings to you & our fellow souls in pain

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    1. Thank you yes I’m so tired! I had to convince him to let me decrease slowly. He was gonna cut me off cold turkey! It all stinks. Now I’m down to 75 from 100!& have to go to 50 on Saturday. I don’t know if I should just give up or try to find another dr to see if I can stay on & keep some semblance of a life? I’m sorry for you too!

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    2. You can’t give up. That’s the easiest way to end the suffering but it’s not the right way. You have too much going for you & people who love you! Then there’s people like me who need you!❤️ But I understand

      Unfortunately it sounds like it’s time for a new dr. I absolutely hate the thought of having to do that so much that my anxiety sky rockets & my chest pains start up again, along with all the other daily ailments. But you need to do what’s right for you! You are in my thoughts & prayers along with our brothers & sisters who are fighting the same battles

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    3. Hi Vee!
      My email is peopleinpainunite@yahoo.com if there’s any way any pain dr you know of here in Michigan? Please send his or her name my way if at all possible? But if you don’t like them , then forget it. I can’t deal with more rudeness and being fearful when I’ve done nothing wrong. I’m not throwing in the towel yet. I may just get off of everything & see how horrific it is! The reason is because im sick & so tired of having to get PTSD symptoms every 30 days. It’s ridiculous. I don’t like being “married” to My pain dr either. I’m starting the 50’s Saturday morning- so we shall see?? Thanks for checking in. How are you?

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  2. This is ridiculous! My primary prescribed my usual anxiety medicine for me & the PA at my pain drs office flipped out on me & took away one pill. I’ve been on the same regimen for over 15 years! Over the past three months, they keep taking away another pain pill. Next month I will be at 1 a day. My RSD pain is at its all time worse. I’ve jumped through hoops for these people so I don’t piss them off yet they continue to take away my life saving medication. My systemic issues are progressively getting worse also. My dr asked Do you work? When I said No I’m disabled he said Then what is your problem. Really? How about a quality of life!! I thought that because of the drug abusers, these pain management specialists were supposed to help people like us. So now what? Don’t throw me in to the same category as a drug addict! Yes I am dependent upon medication just to get out of bed every day. I’m not addicted because I’m not asking for more!!! My body parts affected by RSD are swollen & are on fire!!! I no longer leave the house unless it’s to go to a dr & even that’s an issue. If I can’t move in the morning, I’m not going anywhere for the day. I’ve gone weeks with no food in the house, living on crackers, soup, whatever is in the cupboard because I cannot leave the house.

    How do I tell my family that because I’m no longer getting any pain relief that my blood pressure will continue to climb until my heart & CNS give out? I’m so fed up!!! Anyone of you who are in this situation know how hard it is just to bathe. The water hitting my skin is equivalent to spikes being fired in to my body.

    I wish you all a better quality of life. Because I’m this part of my county, I’m not getting it

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    1. I know and I’m so sorry! I feel for you. I’m so sick now too from being taken down 25% overnight… but may I ask what state do you live in please? I’m in MI

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  3. I am so sorry that you had to experience this first hand. I have hope only because not everyone is being treated like this and slowly some changes in our favour may be on the horizon. I have taken a lot of solous in your past writings, but like you say, it is far different when you yourself is going through the same trauma as others that need your help. I have been a helper and a doer all my life and happily so. In the last 10 years Ive been traumatized by the lack of care and empathy towards me by many people including colleagues, family and the medical community. Last year was the worst when my primary physician did not appreciate the fact that I was not responding well to her recommended Cannabis Oils and a forced tapering of opiates I have been on for many years at the same dose. I had even cut back on some others to try and appease her to no avail. It was only a few months later when I went in for refills asking for the dosage to be reinstated that she used the opportunity to discharge me from her care. I brought my partner to this appointment for moral support, and I’m sure she did not like this either. She had threatened this 1 year before, but because I appologized for whatever it was she was slighted by, she kept me on. I had been looking for another MD since then, to no avail. Even my specialist had no one to refer me on to. Prior to all of this, I had been followed what was happening in the US with opiate prescriptions and was reassured by both physicians that nothing like that would ever happen in Canada and not to worry as I was never taking that high of a dose. Well it did and is happening here as well. I am baffled daily by the inaction of our medical community and the quick response to save oneself. I have since found an MD after runnning out of medications and going into crisis from too quick of a taper. However, this is a conditional arrangement whereby I have agreed to try new treatments of prolo therapy which after 6 months have made no improvements and always make my pain worse the first 2 weeks post treatment. In addition, I have had to stop treatments, injections and radio frequency that were working albeit their effect is rapidly decreasing over the years. The biggest kicker for me is that I was a registered nurse for 30 years and I have to attend my appointments like a sheep as you say, like I don’t know my body by now and I have no intelligence. I used to participate in my local support group and advocate for our rights through them , but the decline in function I have experienced as a result of the inaction and treatment of the medical community now prevents me from doing that. In addition, in the last year I have been symptomatic with the tachycardia and hypertension that Ive had for the last 8 years or so untreated as it is due to the pain and nothing else, Ive been told. Well pain is stress and now I can control it less, so not sure why hypertensive caused by work stress can be treated but not from the stress of pain. I too feel like I’m just waiting for that stroke or MI to either kill me or debilitate me further. I would like to live to see my kids get married and maybe have some grandkids , but that may not be the future for me unless big changes happen. In Canada we are also experiencing changes with pharmacies as well. I get interrogated for each monthly refill by the pharmacist even though nothing has changed. It all seems assinine doesn’t it? Despite all of this, I still have hope as medicine is supposed to be evidenced based and on good sound research not redorick or hype. In adddition, medicine has never been a one size fits all appproach either, which is the case with the broad blanket approach to chronic pain patients. I hope that the medical community gets back to the basics soon as this backward kind of approach to the care of any patient is extremely dangerous at worst and ineffective at the least. I get my best care from myself and my devoted partner and suprisingly, the carers that see me the most, my physio, my massage therapist and my acupunturist. None of these people judge me even though all of their efforts have very limited but positive effects on me for the most part. I keep trudging on through thick and thick and this past fall was the worse because of a doctor’s actions pure and simple. I hope you find hope in my words as I do yours. Take care friend, sending you gentle hugs.

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    1. Thank you ! I’m very frightened at this point. I’m not afraid of not having meds but afraid of the unrelenting horrible pain that I will have to live with now.. thank you so much for your love & support… Suzanne

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