I have family, some living here at times, but I'm alone. It is so hard for others to understand how I feel. It is so hard for them to accept that NO I'M NOT FINE! But I will tell you I am to make you happy. I will rename it. Intolerable Perpetual Pain, IPP. Not a syndrome, incurable, everlasting, overwhelming PAIN.
Even when someone says they really want to know how you feel....they don't usually mean that. Not really. I can tell when I do actually tell you some of it then don't hear from you again for months. Kindof a hint there.
Do you really want to know that my head hurts so bad that I have had times that it made total sense to get a drill and put a hole in my head to let the migraine out!! I was determined this would work. Only stopped by a relative who heard me in the garage at around 4am. There was a trip to the ER.
I used to end up sitting and rocking and crying and throwing up...all these things just made it worse. Now I am lying down hiding my head doing my best not to cry, rock, or get sick. I have mastered the art of not crying and of not throwing up. This does have an adverse affect. Times when I want to cry....I can't. Times I needed to be sick and get rid of something bad in my body...had the hardest time getting to the point of throwing up. Horrible nausea! And I am used to nausea....comes with the migraines before during and after. This mean nausea on pretty much a daily basis.
I will continue this later. The middle son is here and talking a LOT lol.
I WANT TO WIN THE LOTTERY
Noooooo, not for the reasons you think. At least not the first reason anyway. I keep thinking that if I won the lottery....several mil would be nice...I could pay a doctor to actually LISTEN to me! Novel idea. I feel if I can just get someone to actually hear me they could help me. Not that I am perfect at explaining. I have spent years perfecting the ability to "act normal" for others not to be uncomfortable. This tends to spill over into areas you don't want but when you shut down something it doesn't like to be selective! Tends to shut it all down. Good and Bad. I think if I could pay them enough I wouldn't feel guilty about taking up more that 15 minutes trying to explain what all is going on. I tend to just tell them the worst of it, the part I just can't deal with anymore and leave the rest on the back burner. Lord have mercy....my stove is full!
I WANT TO WIN THE LOTTERY
Noooooo, not for the reasons you think. At least not the first reason anyway. I keep thinking that if I won the lottery....several mil would be nice...I could pay a doctor to actually LISTEN to me! Novel idea. I feel if I can just get someone to actually hear me they could help me. Not that I am perfect at explaining. I have spent years perfecting the ability to "act normal" for others not to be uncomfortable. This tends to spill over into areas you don't want but when you shut down something it doesn't like to be selective! Tends to shut it all down. Good and Bad. I think if I could pay them enough I wouldn't feel guilty about taking up more that 15 minutes trying to explain what all is going on. I tend to just tell them the worst of it, the part I just can't deal with anymore and leave the rest on the back burner. Lord have mercy....my stove is full!
I had been wrestling with my hair for weeks. For some reason I can't stand my hair touching my neck or anywhere. I am constantly pulling it away from my head and holding it there. I let it grow out some so that I could get it into a pony-tail...didn't work. I feel like I can feel my hair all the way to the ends and it's driving me crazy!!
At this point I have been driven nutzz by my hair for months now. A lot of things are going on. I don't want to get dressed. I haven't dyed my hair. (OMG) My good old recliner that I couldn't sleep without...I can't stand it anymore. I can't stay in one place for any period of time. In the chair, to the bed, to the couch, try the floor, sit in kitchen chair, stand up and lean on chair, get pssssssd sit back in recliner! Frustration level off the charts now. Weeks of this really do make you think you will loose your mind.
When it is dark and quiet, 4am and I can't sleep, I keep thinking OK tomorrow I will get dressed and wash my car or heck...just walk outside (I think I am vitamin D deficient right now). I think of a hundred things I would like to do.....tomorrow. I finally get a little sleep. I get up, get my coffee, go back to the $#@$ recliner and don't do a thing. I am disgusted but it hurts so much I just can't make myself do anything.
I am now extremely fed up with my hair. This is wrong....hair doesn't hurt....how is this possible?? I have been fiddling with this hair all day. I can't stand it touching my neck in particular. About 4 am I have totally had it! I get the clippers I used to trim my boys hair, get the #8 attachment..thinking that won't be too short. Stand in the middle of the kitchen (no carpet there), no mirror, and just start cutting it all off! I am looking at the floor and all the hair thinking this is going shorter than I thought it would. I should go look in the mirror and make sure I don't go wayyyyy too short. Naaaahhh, it's not touching anywhere and I feel less nutz, keep going! I buzz until I don't hear it clipping much anymore....did my whole head. WOW it does feel better! OK, I have to go look in the mirror now. O..M..G!!! Of all the ways I have worn my hair in +40 years THIS has to be the WORST! But......it feels good! My hair is not touching anywhere...wow...maybe I won't go crazy.
Now if I could just fix the problem of not being able to stand cloths touching me! Can't stand my pants, actually I can't even stand underwear...even those oldie bloomers I found, I can't make myself keep them on. I have 2 pair of PJ pants that I will wear. a pair of very soft ones, that are loose as can be, and my "cow pants" lovely pictures of cows all over. Appropriate... since I feel like a heifer these days. Then there are the huge, loose, falling apart, long sleeve T's to wear with it. Oh and the fluffy robe I have to have on until the hot flashes hit.
So there is another reason I am not going out of my house. I hate what I am doing...or not doing. I don't want to be this way but I feel so horrible I really don't care. I want to care. I am getting closer to caring again. The last year and a half I got worse than I ever have been. It is soooo hard to figure out how to climb out of that. Still not sure what I did or didn't do but seem to be coming out of it.
This brings me to Prednisone day 5.
Rough night last night. I got scared. My heart felt like it was fluttering funny. I got a painnnnnn, Top of my right lung...I got dizzy and lightheaded, felt like I was going to pass out. First thought was my heart....wrong arm to have pain in for that. Took a minute to think about my lung. I have had a totally collapsed left lung with chest tube and 20+ partial lung collapses since on my right side. I think I totally avoid that thought because the chest tube scares me more than anything else in this world.
The inflammation that the prednisone is calming down turns out to be EVERYWHERE! My hair driving me crazy.....inflammation in my neck. Clothes driving me nutz.....inflammation in my chest wall, in my a back. I put my shoes on and didn't want to take them off immediately! Inflammation in my ankles! Shirt not bugging the crap out of me....inflammation in my shoulder's.
I had 2 high energy days on the prednisone. Today not so much. Woke up with a migraine.....FUN FUN FUN! Had those thoughts this morning that maybe I could let the da@# headache outta my head! One part of me thinks that is really stupid...but another part of me thinks it is possible! It might work! For a chance that it MIGHT work I have to really consider the best way to do it.
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