Several of the Moderators and the site owner-managers here at Living With TN have asked whether we might put together another page on the topic "Coping With Crisis". I've volunteered to take on that job, and I'd like what we write to reflect your experience as pain patients, and that of your families. So this discussion is to ask for your input.
In this instance, we're not talking about the "run of the mill" daily crises which pain patients go through - even as debilitating and disabling as those can be for many of us. Instead, we're interested in where you may have gone to get help, and what kind of help you got, if you went through a period when you were simply at your wits end and didn't think you could take any more. Sometimes this kind of help is called "interventional". It is intended to stop a cycle of pain/depression/more pain/thoughts of suicide or self-harm. Sometimes the issue is debilitating pain, and sometimes it's crippling depression and emotional collapse. Sometimes both.
When you went through something like the above, to whom did you reach out for help? What worked for you? How are you now?
When we've generated some discussion on this subject, I'll try to put the whole thing together in an orderly way and post a page of resources and "immediate help" for people who need more than the daily support and concern of other members here on Living With TN.
My biggest “crisis” came when my family had an intervention of sorts with me around 10 months ago. I was constantly sleeping, was barely functioning in the home and taking a lot of sick days. Up to that point I hadn’t shared enough with them regarding TN. They thought I was suffering from depression and had no clue my meds had zombied me out. I made a big decision to regain control of my life.
The first place I went was the internet where I found “Living with TN”. What a relief. I read, read, read and read some more. I ordered “Striking back”, saw my family Doctor, talked with my family about what was going on and changed some of my meds. I could not have accomplished any of this without taking the first step of going on-line or without the support of our group.
I know you are likely looking for something a little more concrete, but it is actually this site that has given me the tools to cope and continue. The other thing that has helped is using the site to give back to others that find themselves in the same place I was a few months ago. Sometimes I ask questions, sometimes I answer. So far this is really the only place I have found where the people are going through the same experiences I have. No one is telling me what I should expect. No one is citing wikipedia references and telling me what mold I fit. This is real life on here. It doesn’t alway match the medical books either. I have discovered medication side effects on here that my pharmacists can’t find.
As we have more members and more postings - I would just like to see a more detailed way to categorize or label discussions and blogs so we can decide if they are relevant or not by the description alone. A title like “help” is intriguing but doesn’t give a clue what the topic is. A title with “help with medication” at least tells us the discussion topic.
I think the addition of the face pain info tab is great.
I would like to see the main page hold discussion / blog posting for a longer period of time. For instance, I had to go to your personal page to pull up this discussion so I could reply. It already disappeared from the main page and it isn’t that old.
It would be nice to have more than just a suicide hot-line (s) listed on our web site (and I am sure we already have more - I'm just being lazy and not looking right now). We should have book and video resource recommendations as well as a directory of services in "your" area. For example, in some areas in Canada our Public Health department will provide Home Care services or Mental Health home visits.
Elaine, this is going to be a large project, I think. But so was the Face Pain Info tab. Right now, your input and that of others will help me get a good outline to write against -- and make the project go faster and be more "real" for people who read it.
Thanks for the input. Hopefully by being a "featured" discussion, we'll keep this thread visible for a while on top of the stack.
I have had a tough time this past year. I had not been working for quite sometime and medications/pain were making it impossible to function beyond my couch. Due to my not working, money has been a huge source of angst between my husband and I. At his wits end too and upset at the situation overall, he mentioned that he might leave me in the future if things did not improve. I have a non-participatory immediate family who live a few miles away (worthless, as my husband says) and when he told me he might leave I had a sense of over-whelming dread and terror at the thought of having to deal with this on my own.
Before things got away from me, I called my local sheriff's department and was given an emergency visit with a psychologist. This saved my life! Feeling alone and stranded are the reasons why I come to this site, though not as often as I should.
While I have not been able to afford to see a psychologist I have in the past and it makes a huge difference. Perhaps, a link to the American Psychology Association- Find a Psychologist link might be helpful. Psychologists are not neurologists or medical doctors but some do have a background in pain management or specifically work with people who suffer from chronic pain (I have seen one).
Johanna -- This is quite helpful. Please do add other thoughts as they occur to you. One point of emphasis that I'm seeing in all of the responses so far is that crisis care needs to be local to the client. I've also sent email to the managing editors of the Journal of Crisis Intervention and Suicide Prevention, soliciting resources and inviting professional peer review for whatever we come up with. We'll see what turns up.
I've been doing background research this week, Jackie. I've already located one 800 number for a US National Directory of Hotlines and Crisis Intervention Centers, as well as a State / Province listing of similar online resources for the US and Canada. If anybody wants to help me vet some of these resources, I'd appreciate opinions on the following links:
I'd like to get past the focus on suicide, however, to offer useful starting points for dealing with illness-related family crisis and co-morbid depression. Your experience with your neighbor is an excellent example.
Thanks and please keep those cards and letters (and resources) coming...
While Johanna’s post focusses on her need for emergency emotional support I noticed there is an underlying issue she brings up - the issue of finances. That is an issue many face. I am NOT adequately covered for disability insurance and now have been repeatedly denied additional coverage because of TN. If I am forced to quit work, the financial stress will be devestating. I think we also need to address the need for financial crisis support.
Hi there "Red"- I am 8 weeks post MVD ,symptom and drug free - a different person to a couple of months ago.
I had been managing well with drugs and regular visits to the neurologist before my crisis. Drugs failed, and I became unable to eat, was in worsening pain etc. I trawled the internet looking for answers and came across this site and also the TN Australia site. Both were of huge help in understanding the condition. This site gave me 24/7 access, vital for the small hours and the TN Aust group were also great - both on the telephone and internet, they offer regular meetings in each state too and access to resource info. I also have a friend in the UK who(unbeknown to me ) hadTN for the last 7 years and became a great source of comfort and support both on the phone and via email. The one on one support from a fellow sufferer was hugely helpful and as we are now both post MVD we still chat and support one another .
Thank you for your input, Emily. I intend that our "Coping With Crisis" page will reinforce for readers, the need to stay connected with both in-person (family, community) support networks and 24-7 forums frequented by other patients who are going through the journey with us. This claimed connection is something that pain patients need to do "for themselves", in addition to reaching out for resource help from the professional medical/psychological care givers' community.
Elaine, I quite understand your point on financial crisis. I see it in disability applicants all the time. And please understand that it may be the toughest nut of all to crack. I'll do what I can, of course. But please realize that medical expenses and illness are primary factors in over half of all US bankruptcies. Financial crisis support is very thin on the ground in every resource collection I've tapped so far. I am more than open to hearing about resources of this type from any of our members.
Thanks for bringing this one up. I, too, have tried to find some financial crisis resources and they are few and far between. There are some credible credit-counseling agencies (those that end in .org and who have a good BBB score) that can offer some help with basic issues but they can't get you into see a doctor.
Here in Washington State we do have a few programs that are helpful with medical: prescription drug discount programs, sliding scales offered by non-private medical providers (well, most have a sliding scale). However, I don't qualify for ANY sliding scales because I have private insurance, don't know if this is the same if you are on Medicare/Medicaid. Apparently, our gov't thinks I am rich because I pay an astronomical amount of money to have private insurance as I can't work.
One prescription medicine program accessible to everyone is a company/program called Rx n' Go. I was given the information by my doctors office. They offer huge discounts on generic medications. For instance, I was taking the generic of Trileptal last year when my private insurance stopped paying... generic non-discount cost 300$! With Rx n' Go a 90 day supply is 75$. Your doctor can send your prescriptions directly to them for fill and you pay them via phone. Membership is FREE! Red, hope you read this post as the above is an awesome resource for financial struggle getting medications.
Elaine, if you have any resources you use will you pass them to me? Thanks for making the point as this is the very bain of my existence at the moment. Take care. Johanna
Elaine Iles said:
While Johanna's post focusses on her need for emergency emotional support I noticed there is an underlying issue she brings up - the issue of finances. That is an issue many face. I am NOT adequately covered for disability insurance and now have been repeatedly denied additional coverage because of TN. If I am forced to quit work, the financial stress will be devestating. I think we also need to address the need for financial crisis support.
I responded to Elaine below with information on a discount prescription drug program available to almost anyone that is free for membership: Rx n' Go. See my post to Elaine.
Johanna
Richard A. "Red" Lawhern said:
Johanna -- This is quite helpful. Please do add other thoughts as they occur to you. One point of emphasis that I'm seeing in all of the responses so far is that crisis care needs to be local to the client. I've also sent email to the managing editors of the Journal of Crisis Intervention and Suicide Prevention, soliciting resources and inviting professional peer review for whatever we come up with. We'll see what turns up.
Thanks, Johanna. Not only will I check out Rx n' Go for our Coping with Crisis page here at Living With TN, but I'll post it to my own page for free and low-cost medical services.
I'm in Canada so our coverage is quite a bit different. We do pay for a lot of our own meds. If you have private health that kicks in first. Then we have provincial support that will kick in if your income is low enough. If your family income is a bit too high and you have no private health care you are caught in the middle and have to pay on your own. Thankfully our Doctor / Hospital visits are free.
To save money, always ask for the generic brand. Ask if there are any 'bulk' pricing options. Perhaps 2-3 month supply is cheaper than a one month supply.
This IS a huge can of worms because of the differing systems in each country / state / province / region
Johanna Smith said:
Elaine-
Thanks for bringing this one up. I, too, have tried to find some financial crisis resources and they are few and far between. There are some credible credit-counseling agencies (those that end in .org and who have a good BBB score) that can offer some help with basic issues but they can't get you into see a doctor.
Here in Washington State we do have a few programs that are helpful with medical: prescription drug discount programs, sliding scales offered by non-private medical providers (well, most have a sliding scale). However, I don't qualify for ANY sliding scales because I have private insurance, don't know if this is the same if you are on Medicare/Medicaid. Apparently, our gov't thinks I am rich because I pay an astronomical amount of money to have private insurance as I can't work.
One prescription medicine program accessible to everyone is a company/program called Rx n' Go. I was given the information by my doctors office. They offer huge discounts on generic medications. For instance, I was taking the generic of Trileptal last year when my private insurance stopped paying... generic non-discount cost 300$! With Rx n' Go a 90 day supply is 75$. Your doctor can send your prescriptions directly to them for fill and you pay them via phone. Membership is FREE! Red, hope you read this post as the above is an awesome resource for financial struggle getting medications.
Elaine, if you have any resources you use will you pass them to me? Thanks for making the point as this is the very bain of my existence at the moment. Take care. Johanna
Elaine Iles said:
While Johanna's post focusses on her need for emergency emotional support I noticed there is an underlying issue she brings up - the issue of finances. That is an issue many face. I am NOT adequately covered for disability insurance and now have been repeatedly denied additional coverage because of TN. If I am forced to quit work, the financial stress will be devestating. I think we also need to address the need for financial crisis support.
My crisis came in April of this year when the pain was so unbearable that I could not eat, could not talk and could not even move without terrible pain. It was 2 months after Gamma Knife. The pain had never been so intense and so frequent (every 3 to 4 minutes an attack and trigger pain every time I moved at points even if I blinked). For 5 days even drinking water to take my medicine was a monumental struggle. I did not eat for a few days. It turns out I was becoming dehydrated and ended up at the ER because I couldn't take it any more and did not know what to do.
I've been at the emergency room a couple of times. The first time I was treated with an attitude by the nurses who appeared to be thinking I was in only for pain medication. They did not know what TN was and when the doctor came in he gave me a narcotic and sent me home. I felt humiliated, the narcotic didn't work (I'm TN I), and felt it was just a waste of time and money to go. For what I've read here, many have had similar experiences. I asked my neurologist to give me a note with my diagnosis in case I had to go to the ER again.
Back to April, I went mostly because I needed fluids. The ER Doctor called my Dr. who gave him directions and I was stabilized, given medications, and was able to go to my Dr. within a couple of days.
I think the note from my doctor made a difference at that time. Being prepared for a crisis is always said to be the best way to cope with it. There are some crisis for TN patients that can be anticipated. For me, having that note made a difference, having someone close to me (my husband) who understands TN is another way to prevent and cope. When I was in College I was taught that prevention, mitigation, and coping with consequences were aspects of a crisis or emergency to be prepared for. Red, I think this is a way to sort possible ideas.
I agree with the financial aspect/crisis, but I don't have ideas for that once a crisis is set. This is one of the consequences of a health crisis that we deal with. I am feeling as if a tsunami is catching up with me right now, but I hope I can go back to work soon.
Jackie, When it comes time to do peer review on our Coping with Crisis page, remind me that I've promised a subsection on "Planning Ahead", which should include a short text that can be printed out and carried constantly in a purse or wallet, for presentation to medical people when a pain patient cannot speak.
Thanks (greatly) for this input, both...
Jackie said:
Carolina, I so empathize with you on this. I am type l and I presented at ER when I was diagnosed in a similar condition to the first one you describe. I could not say a word for the pain. I had to write everything down. I was quickly diagnosed by a Maxiofacial Dr but she gave me a good telling off for not talking to her???!!!!! and she understood TN! It seems to me your Dr's note is an excellent idea. Also Rockhopper made a suggestion to download a fairly cheap App to Iphone or IPad and it will talk to the Dr for you as you type in. I shall not forget this tip.I will have to be careful not to swear if I get the same Dr though. All the best with managing your TN. Jackie
My first of several ER visits (summer 2007) I was with a friend who knew, and the EMT folks stopped trying to treat a heart attack; I would have done the same, I was symptomatic.
I kept a note in my wallet after that, until the next time. That didn't work out so well, it took me awhile to be able to point to my back pocket.
I wear a Medic-Alert type ID bracelet and I still carry my note. Emergency planning is important, as we hear the "Talk To Your Doctor!" ads.
Bob, there are no perfect solutions. The Medic Alert ID is a good start for many people if one can afford it. A more detailed "Advice to Attending Physicians" note can do a lot of good and I've talked with any number of patients who swear by such information sheets.
Thought of one more coping tool/program/training... I particpated in a group program called Dialectal Behavior Therapy (DBT). It is a program/curriculum that is based on learning how to cope with life in general. The group is facilitated by a trained professional- most often a psychologist. This is not group psychological therapy! It is designed like a class with assignments and reading. The focus of DBT is to learn how to cope in all types of situations. It is divided into 4 sections: Mindfulness training (relaxation, awareness of ones' self, staying focused on the moment, balance in general). The 2, 3, 4 sections are Emotional Regulation, Distress Tolerance and Interpersonal Communication. I participated in the program for 1 year and learned many useful skills which have helped in managing depression, anxiety and sometimes pain. It provided me with an ability to recognize and acknowledge when I was sliding down into despair and to try to turn it around and seek help from others. I found it to be one of the most useful courses I have ever done. It added a lot of tools to my toolbox.
It is a well known type of therapy and is available in many places... even on my tiny island of 6000 people.
One of the principles I intend to give some emphasis to is a reality validated by a large body of medical literature: no matter what the external condition may be, we always have the power to affect our experience of it by changing our attitude and taking back power we have "lost" (or given up) by obsessive concentration on that condition. Patients who take back their power and assume an active and assertive role as members of their own medical care teams almost uniformly obtain better outcomes in reduced pain and distress. Not only from TN, but indeed from all medical conditions.
I had already been planning to make mention of Rational Cognitive Therapy as a coping mechanism for self-awareness and self-regulation. DBT as you describe it seems to be a variation on many of the same tools. However, I will research this variation more thoroughly before I describe and recommend it. Thanks for the tip.
Regards and best, Red
Johanna Smith said:
Hi Red.
Thought of one more coping tool/program/training... I particpated in a group program called Dialectal Behavior Therapy (DBT). It is a program/curriculum that is based on learning how to cope with life in general. The group is facilitated by a trained professional- most often a psychologist. This is not group psychological therapy! It is designed like a class with assignments and reading. The focus of DBT is to learn how to cope in all types of situations. It is divided into 4 sections: Mindfulness training (relaxation, awareness of ones' self, staying focused on the moment, balance in general). The 2, 3, 4 sections are Emotional Regulation, Distress Tolerance and Interpersonal Communication. I participated in the program for 1 year and learned many useful skills which have helped in managing depression, anxiety and sometimes pain. It provided me with an ability to recognize and acknowledge when I was sliding down into despair and to try to turn it around and seek help from others. I found it to be one of the most useful courses I have ever done. It added a lot of tools to my toolbox.
It is a well known type of therapy and is available in many places... even on my tiny island of 6000 people.