I need to vent..... I am sorry but I need to get it out

General General TN & GPN (Old Site)
1

I know you all feel the same, and have heard it so many times, but I feel so helpless and hopeless right now.

Today just topped it. I was having a pretty good day, no pain, getting things done. My dad has just had knee replacement surgery and he and mom were leaving to go to a doctor's appt for him. He left on the table some peanut M & M's, my favorite. I know that one of my triggers is chewing. But I thought to myself "If I just have 4 I won't have a problem." 20 minutes letter, I was screaming in agony. I ran for my pain meds, which take a while to work. Laid down.

Phone rings..... it is my daughter. "Mom, you need to come get me. Kayla can't take me to dance." I am crying, the tears leaving trails that are added agony. Opening my mouth to talk is like kicking my teeth. I call me mom, they are still waiting for the doctor. I go down my list of emergency contacts and no one answers. NO ONE. I am out of my mind with pain. But what do you do? My daughter can't even walk home because we live 10 miles from her school.

I grab my phone, purse, and jet out the door, hanging on to the railing because standing causes spots to appear before my eyes. I get in the car, drive down the gravel road, wincing, crying, screaming at times and drive to the school. We sat for a few minutes as waves of pain proceed to lash at me. She is crying now. "Mommy, I love you. Please don't cry." I drop her at the studio which is closer than my house and sit in the parking lot. The studio owner comes out and helps me to her office, turns the light off, and closes the door. I rest. When the worst is over, I come out where one of the mothers offers to bring my daughter home.

Slowly I drive home. Wiped out, exhausted, crying now because this CAN'T be the rest of my life. I feel trapped.

I am going to have to come up with a better plan for my daughter. Normally my parents would do this, but they could not. My mom was crying on the other line begging me not to drive. But it was already 10 minutes after school was out and my daughter could not wait there for an hour.

I called around and found a taxi services which runs background checks on their drivers. So next time, if all else fails, I will do this. I just can't think when I am like that. I mean to the point that when I left the house, I did not close the dogs up and left the tv on. So I came home to dog poo everywhere and a dog with a nose that is sliced open from the cat.

I know that I am still adjusting my medication so this likely will become more controlled. God, I hope so.

How do we do this? How do we live normal lives? How am I going to be able to practice law --- How can I be responsible for others lives, like I am, when this is so deabilitating and you don't know when it is going to strike? I am so scared right now.

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Lisa, you've had a really stinko day, to say the least. Many of us understand the need to vent when so much goes wrong all at once. The fear is a familiar enemy too.

I wish I could help make it better for you quickly. But my intuition is that definitive answers and a concrete action plan are going to need more than that well intended desire. You may need to talk with a professional counselor in your community who has training for helping pain patients in crisis, and who knows your local community and medical infrastructure. You could start with the patient referrals office at the nearest large hospital and ask about psychologists who do support system counseling. Another resource might be an in-person patient support group such as the TN Association groups. A third point of connection might be your local church if you are religiously affiliated.

Sorry I can't offer you more and better helps at this stage. I realize how rough this is for you now. I can only say that it will get better, particularly as your meds begin to stabalize.

Go in Peace and Power

Red

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I just wanted to say that things will get better. When we got this pain, everything stinks!! It's the worst-no bones about it. It does take awhile to get used to medications. I know when I took Tegretol it took me several weeks. Hang in there Lisa. One day at a time.

Peace, Min

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I cant remember the last time I had a full nights sleep, without waking up jolting up in pain. My sister said I look like a rag doll, the way my pain would jolt me back forth. During the day Im in pain....Its just non-stop. There came a point in time, when my my pain was so bad, I couldnt even cry. I kid you not I was in so much pain and frustration that I wanted to cry...but literally couldnt. I would try to breathe, but halfway into my breath the pain would shoot. It was literally like every second. As soon as one pain attack finished, I felt the other pain attack starting.

Im in college...and I work at a very high stress, demanding job. Everyone around me started looking at me in shock after they took the time to research what TN was. They asked how I had such a level of patience...they were in shock.

I personally turn to God...and put my faith in Him. I just had an allergic reaction my meds. So, Im going two more days with pain...my neurologist wont see me until friday.

Dont give up...you are the one who needs to pull yourself together and be strong. It's not easy...I understand your pain. Things will get better, trust that they will :)

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Min, thank you.

Red, I just checked out the TNA to see if there is a support group in my area. My best friend is a counselor and I am meeting with her tomorrow. She is going to find someone for me. I don't have insurance right now and my budget is tight, but she is going to work at finding someone that will possibly help me for free. She is also going to start working on me with the mindful meditation immediately.

Saeeda, I am a lawyer but unemployed right now, so I am kind of taking a break while I level out. I am a Christian as well and right now all I can do is pray...... This was just a bad day and I am coming to grips with a new diagnosis and realizing some things are really going to change for me. It's hard. And kudos to you..... I understand the high stress and no sleep. I was an insomniac for years (still am), worked full time, and went to law school. It's not easy and to add TN to that... wow.

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Lisa- Im glad youre taking a break to take care of yourself. Thats what I'm doing right now...I took some time off of work, going through finals at school so cant take a brk there. But, I am focusing on me...thats most important.

I know how you feel about not being able to drive. I had to rely on my sis to drive me around for a while, because of my meds. You feel so helpless.

I wish we could all just go to Johns Hopkins and be treated there. Maybe theyll discover us on here and take us in lol. It seems like theyve got a great program for TN.

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Saeeda: your note suggests an initiative. I intend to find some pain practitioners at Johns Hopkins and invite them to join, observe, and participate here at Living With TN. Please ping me if you haven't seen some form of follow-up in a week.

Regards, Red

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Lisa I have been where you are more times than any human should be, but remember there is always hope. The people here at LWTN have been a blessing for me and I hope I have helped some as well. Please use us to talk with about any part of this condition. We are all different in how it effects us, but we all know the pain and stress that goes with it.

In addition to having Type 1 TN, I also have relapsing remitting multiple sclerosis. Very recently I have been seen by a team of pain management specialists and a neurologist at Washington University Medical Center who have given me my life back with their treatment plan. For the first time in four years I am at least 80% pain free while taking no pain meds at all. It may not last this way as in the past, but I have now to enjoy. For that I am grateful.

Remember faith and hope are good things, maybe the best things.

Gary

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Thank you Gary!

I did follow up with my friend who is the counselor earlier this morning. She helped me to put some things into place and is looking at finding some free or very low cost counseling for pain crisis. I have been blessed with some wonderful friends who are truly looking out for me. It's great. Actually, it is more than great.

One thing occurred to me in all of this..... how many of us really have safety plans? I am not a suicidal person, but I do have lots of thoughts of hurting myself when the pain is so very, very bad. some of this could be the medications themselves as many warn that thoughts of suicide increase. Some of it can be the tremendous stress that is placed on our bodies during an episode of 8 level pain.

While I feel good today, yesterday while in pain, thoughts did occur to me. Thoughts I have never had. I am a strong woman who put herself through undergrad, then law school as a single mom. My daughters dad (my ex-husband) is an addict who is not around physically or financially. So all this has been on my own. ALL. This, quite honestly, is the biggest challenge I have had in my life to date. This pain beats out even the dreaded bar exam.

My family and I are working on a plan for me. Because of financial reasons, I had to move home with my parents. At the time I was majorly bummed out, but I have to tell you this was a life saver. This is one challenge I am finding I cannot do alone. I need my family and friends to brainstorm with, to share with, to let lose with, to just say, "Hey, I need help." This TN business is teaching me to ask for, receive, and allow people to help me. A very foreign concept for me.

Gary, I am in Oregon... not far from Washington. I should check out what OHSU has down here for something like that. It's only an hour away from me. Hum.

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Glad to hear you are working with a professional who has background in the helping fields. Just an additional resource for you Lisa. Our article on "Coping With Crisis" might give you some further pointers on things to check out as elements of your action plan.

Go in Peace and Power

Redf

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I am so glad you posted that. I am sincerely thankful that I do not have children because I could not do this with children. I had to move back in with my parents and I used to be a Medical Social Worker. I have had more days than I would like to count like that with the exception that I had a family sitting in my office and we were trying to do paperwork and I am crying my eyes out in excruciating pain. They looked at me like I was crazy. Now my doctors will not release me to work at all. So I am now on permanent disability which sucks even more sometimes.

I am still after all this time trying to accept that this is what my life has become and I just have to deal with it.

I have done the same thing with the TV. I put milk in the cabinet, the phone in the fridge, and leave the gas on when I use the stove. I am nearly 40 and I feel like a 10 year old.

All I can do is laugh because if I don't laugh I would just cry and be so depressed.