** Warning...the following is a rant...read at your own risk**
I don't know if I'm strong enough to handle this disease. I've only had it since July 2010 and was diagnosed in October 2010. If it was just this disease, maybe I could deal with it, but in August 20o9, my one and only son, who was 22, was diagnosed with cancer....then in December 2009, I was laid off from my job. After that, I got sick in February 201o and had to have surgery. After the surgery, I had a blood clot and was in the hospital for 5 days on blood thinners...which caused me to lose about 40% of my hair. After that, the TN showed up in July. I'm normally a strong person, but this is more than I can handle....and, I don't know if I can handle this. I don't know if I can or want to deal with this disease for the rest of my life. I'm having thoughts that I shouldn't have....thoughts of "wanting out"...permanently. I've never been in chronic pain before. Tonight, my husband and I discussed this...it got it out into the open, but it's not like it resolve anything. The pain is still there...the feelings are still there...I haven't found a job in over a year. I'm waiting for the results of my son's recent ct scans...I feel like I'm losing my mind...or maybe I lost it already...like a marble that rolled away somewhere and I can no longer find it.
I'm sorry for going on, but I'm having a horrible week and I didn't know where else to go. I stay in the house all day...isolated from friends as they don't understand this illness...I don't "look" sick. I'm tired of soft food...of pb&j sandwiches....of being afraid to brush my teeth or to drink anything. I'm afraid to talk outside cause it's so cold out.
I'm sick of medications and sick effects and nausea and hives. I'm sick of headaches and of being afraid to go to restaurants where I don't have the menu memorized to see if they have "safe" food for me to eat. I'm sick of having to plan my life around this illness and of allowing this stupid disease take over my life! I'm sick of talking about it and complaining about it.....and dr appt after dr appt!
I WANT MY OLD LIFE BACK!
*whew....if you made it this far.....I thank you for listening*
Barbara Ihave had this pain since 2008 I get so tired of it also finding I have to pick my self up to only try try again’ my daughter has severe Asthma. Every time she has a cold It’s back to the hospital or ERI know you said your son has cancer . Prayer’s sent all they have is to look and learn from us on pain and how we deal with it tough road. My daughter been to hospital two week’s on diffent time’s, and ER numerous time’s Just this winter. They need us to be there and teach them how we deal with our pain. Or guess you could say I put mine on hold when she, is sick after all they need us. Yes I WANT MY OLD LIFE BACK but for nowIll be here for her’s. Prayer’s sent. Good toVent you did a good job and there are people here who care we all need that.PRAYER"S SENT
Barbara, apply for Social Security Disability, even if it is disapproved, you will feel like you are doing something. I am so sorry about your son, I know the pain that you must feel, I lost my son when he was 24 and even today 10 years later it still hurts. Know that you are not alone, you have your husband and that is very important. I know I could not handle this were it not for my wife and my rock. Yes the Doctors appointments are a bear. Have another one today but we just have to keep on trying.
Thank you for the hugs and the prayers (and the beer for my husband). I knew this was the right place to vent…thank you for not judging me for the way I feel…thank you so much for that…crying…
Jerry…what do you mean by apply for Social Security Disability? I don’t understand? I’m really new to all this so any guidance is greatly appreciated…thanks!
If you have worked in the US for any period of time, you may qualify for Socical Security Disability, based on the level of your imparement to work. Most people, do not beleive they qualify as the rules are that you can not do any substantial work. The thing is, you really do not know what they will approve until you submit. The worse that can happen is they can say no, but to apply cost you nothing. Here is the site http://www.socialsecurity.gov/applyfordisability/ do not get your hopes up, but talk to your doctors and see what they have to say. I know that a couple of people here did receive the disability rating however the process is long. As I said the worse that can happen is that they say no.
Thanks…I will look at this site this weekend as I see my neuro on Monday, so this information is good timing. I haven’t had my hopes up for a long time so nothing new there…but like you said, the worst they can say is no and it’s not like I’ve lost nothing, right. Again, thanks for the information. I appreciate it!
Oh how your story breaks my heart! I am sooo sorry that you seem to be the recipient of one unwelcome life challenge after another. I was just recently diagnosed with TN, and already I have had those hair pulling days when I've said there is no way I can live the rest of my life like this. But then I read stories like yours, and as rough as things are for you, YOU ARE DOING IT. You are hanging in there, even if by a thread. You are a fighter. You are a survivor. You are perservering...even under unimagainable stress and pain. And I look at people like you and I think "If she can do that, I can get through my day" - which isn't half that bad even when I am having lots of pain. So this may sound strange, but your rant actually helps give me perspective. I am inspired by your strength. You may not feel like you are being strong, but to me you are VERY strong. Thanks for sharing and inspiring me. I am sending prayers your way -that is about all I can do to help. Know that people are thinking of you, and pulling for you to keep putting one foot in front of the other. Just one step at a time.
One side note - I share the sentiment about restaurants. That used to be a favorite thing to do - eating out. Now meals are painful - at home or in a restaurant. Food is no longer fun. (and no, I am not dropping the 20 extra pounds I carry.) I feel like a hermit too, and was trying to think of something I would be comfortable going out to do. I think a movie might be good. I won't feel awkward like people are looking at me. I won't have to eat. It's warm at the theather. And hopefully I can find a good movie that will take my mind off my medical issues for an hour or two. Anyone have a good recommendation for a recent movie release?
You've come to the right place to vent and let it all out. I think almost everyone here understands what you are saying and why you feel that way.
I was diagnosed with trigeminal neuralgia Type 1 in 2001. I was so relieved to have a diagnosis for my mystery pain, I shared the news with anyone who would listen.
I'm sorry to hear about your son with cancer, your job loss and your other health issues. It is heart wrenching to watch those we love have any type of pain or illness.
I share Leslie's thoughts - you must be really strong to handle all of this, even if you are venting in this blog. I hope that you mine the website for good information about your own trigeminal issues and take care of yourself. There are a lot of members with great information to share and I hope that you will take advantage of that.
I'm sending all my positive thoughts your way. Please let me know if there is any information that I can help provide.
Oh Barbara, I have been at the place where you are so many times feeling that I can’t deal with this disease/disorder/thing from now on but just like God does, He managed to bring me back to the light. And, I remember that through God all things are possible and I place all my Hope in Him. But even with that being said (needed that myself right now), I still get down and want to crawl in a corner and just give up. However, I will say you are a brave lady. You got it out. You said it. I’ve been too much of a coward to say it out loud (or type it in this case). So, thank you thank you thank you thank you for your bravery. I wish no misery on anyone but it helps to know I’m not alone. I guess it might help to remember the strong bears the infirmities of the weak. So we use this site and those who truly love us and, for me, more importantly trust God to make it through each day.
And, Girl, guess what? Each day we wake up and press through, we are doing it! Yea for us! So see, we are stronger than we knew. You hold on and I will too. Thank you.
There were be little breaks of sunshine when the pain lessens.I had an MVD and the balance nerve and hearing nerve was damaged, so I now walk like a drunk. I get followed around the supermarkets by security men. You should see their faces when I get in the driving seat of my car and drive off.Worse still the MVD has stopped working.I get 4 or 5 hours of being awake every day.My neurologist told me, what i had was’nt going to kill me"not much comfort.Maybe they will find a cure or better medication.THEY will.Take care, we are all there with you.
Barbara...as much as some of us do not want to admit it...most of us have had those thoughts. Hang in there...I was there recently and you can fight through this but it's not fun and it's not easy. You have just got to push through the bad times. I got where I started doubting the power of prayer because I had so many people praying for me yet the pain and everything else in my life pulling me down. I had MVD surgery on Dec. 14th, 2010 and it was not the piece of cake I had planned. I had a CSF leak afterwards and that I think was worse than my surgery pain. I had a more difficult surgery than some but it's okay because I have made it through that. I still have a puddle of fluid in the bottom of incision...strange thing it is but eventually that will go away and then they will take me off the gabapentin and we will see if the surgery was a success. If not, well I will choose meds over surgery for quite some time because the surgery was not easy for me. Anyway, I have other issues in my family that are also stressful and hard to deal with when you are not feeling well. When you feel bad and are in pain it's almost impossible to deal with much else. I just want you to have hope. Just try to stay positive. Know that there will be that light at the end of the tunnel eventually. Try to surround yourself or talk to positive people. Also you will find stories and support here. I read so many of the stories here and some were so much worse than my case and I felt blessed just to have my pain and problems. I will say a prayer for you now and I want you to keep reading and posting on this site. Just letting others know how you feel and reading their support comments can help. Take care of yourself....I will pray for you now.
Boy, you hit home completely! Thank you for blogging. I could have written what you wrote myself-it's the same for me. With me, however, it's my 21 year old daughter...thyroid. I had parotid cancer and it is believed that the surgeon "knicked" one of the trigeminal nerves. I live where it's now rather cold, and I'm afraid to walk my dogs (who have now gained weight due to lack of exercise) because the wind, cold, and weight of holding two 52lb basset hounds (doggone they're strong animals!) frightens me. The cold and wind may or may not start a pain episode, but I'm too chicken to try it.
And yeah, I too am just sick of being sick. I had to do a disability retirement in 2010. I'm adjusting at the moment by watching about 12 hours of friggin television and I don't even like TV. Reading is difficult because I also get blurred vision in the right eye (the side of the cancer and tn), and with the meds I often don't remember what I just read.
Okay, I should hush now. Again, thanks for blogging. I'm not alone in my thoughts.
Peace to you and your family. May your child beat his illness and prosper.
Take care,
Andrea Strong
Do you get what feels like a hypodermic needle being stuck through your ear into your head? Or being punched repeatedly in the face (seemingly)? And the nausea. I deal with constant nausea-do you or anyone else have daily nausea? I have injectible compazine, but I'm not too thrilled with inter-muscular injections on myself. My husband almost faints if he even sees a needle and it's hard to "hit" the right area of the back of the hip. I'm not a contortionist!!!!