Well, this is the second day in a row that I have not slept. I have been up all night and day and my frustration level is at my reaching point. I was doing ok, had found a doctor I really like, finally found out what I had, started some meds, and was also going for chiropractic care. Sounds like I am on the right track huh? On friday had to go see my neurologist because I developed a large red circular bruise that looked like it had "pin pricks" inside it. I had read that zonegran could cause bruising or a fatal rash, so I thought better safe than sorry. Friday night I was relaxing quite nicely at the chiropractor and was practing my "positive thinking" techniques I am so desperately trying to incorporate into my treatment.
Friday I went to bed as usual and nothing and then the panic started to set in. I would just get to the point of calming myself down when a noise or something would startle me and then it would start again. The tight chest, racing heart, aches and being so tired but can't seem to wind down. Is this normal now? Is this yet another wonderful thing I have to look forward too? I already have robbed of my energy, my drive, the meds are taking my alertness, and in case I forgot I also am reminded of the pain that comes again and again just to remind me so I won't forget it. I am already on Zoloft for panic and anxiety attacks. My primary doctor put me on this a few months ago when I had a "pain breakdown" and could not quit crying because I was so frustrated and tired. I just want to know if this is normal for just being diagnosed because of all the information, maybe I am getting "overload" or is this just another symptom of this disorder that I am now experiencing? I have tried for two days the deep breathing, mental picutres, "go to my happy place" and it is so not working. I have to work tomorrow and how can I function with no sleep?
I also just want to vent for a minute about people not believing you are in pain. I am trying to come to grips with all this but I have a few issues that I know I need to work on. The first one is that it took me so long to get diagnosed by so called experts who I now find out are nothing but stupid. The second and biggest thing for me now is that my family did not even believe I was in pain. Let me explain...... I am probably what you would call a 'drama queen" when it comes to pain. I do not handle pain very well and will think nothing of telling eveyone about how much pain I actually was in. Of course in my stories the pain or the situation is just a little bit more difficult or dramatic, you know..... so I look good in the end. Well I have two relatives in my family that are in the medical profession and although I have not went to them professionally, I have over the last several months asked questions, talked about my symptoms and just tried to see if anyone had any clue as to what was wrong with me. Actually, TN is something I found online when I looked up my symptoms. I also found dental issues and TMJ. I was sure that I had either some version of TN or TMJ just based on my symptoms and body. Well I told my relatives this idea and they were positive it was not TN. I was not in a lot of pain they said, how could it be that? These people don't see me all the time and when I do see them or talk to them I try so very much to put on a happy face because they told my mom a few years ago all I did was complain. Do you think I am going to whine and cry in front of them and let them rub it in my mom's face that they were right? NO, because I would rather just get along peacefully and have my mom be happy. Fast forward to now and the diagnosis comes out and POOF! I am right for once! I truly wish I had not been but at least I was paying attention to my symptoms. I talked to my Aunt that night and told her and she did not even offer up any "I am sorry you have been in so much pain" or " I know this has been very difficult for you." All I got was that I had a doctor to help me and now I had a name. Well......so much for family affection. The other relative was worse. My Uncle has not even called me to ask about this and when I talked to my Aunt who is his wife all she said was that my husband and I should pay off all our bills so I can quit and stay home if the pain and meds would eventually effect me worse. Now mind you, I know not everyone is close to their families but I am the only niece/nephew they have on this side. My mom is the only one that had a child and it is me. You would think you would be concerned about your only niece. I am just so hurt and my heart is broken. My mom is not anything like that, she is the most compassionate and kind person you would ever meet. My other Aunt has not even responded to me about all this, even though two months ago she had a colonoscopy for blood in her urine and thought it could be cancerous but turned out not to be. I called her, messaged her and even offered to come in the day of her surgery if had not just started anothe job. How do you deal with this? How do you go about getting your life back and acknowledge all these adjustments you need to do now when your own family does not even know how much intense pain you have suffered? That on top of the fact that two are in the medical profession and have knowledge of this disease. I told my mom years ago that they treat me differently and this is just another situation to prove my point. How do you deal with family, coworkers, friends, etc. who don't think they pain you suffer is real or that is is not that bad? I am just to the point where I am sick and tired of all the comments and trying to explain my doctor appointments, my swollen jaw, the reason I don't smile anymore. If any of you have any advice I would so appreciate it. Also, thank you so much for letting me vent. I feel a little bit better just getting this off my chest.