When I look at these kinds of rides I know I'll puke on them. I don't like them and it would be torture to physically be on a dizzy ride like this for me.
This is day two of lack of sleep. Yesterday I tossed an turned until after 4:30am and slept 3 hours. Today it's the same. It's so hard to sleep when you're in pain- and it's probably the meds too.
I saw a neuro/pain therapy Doc today. He drew the lovely circle of pain and said that the pain gets worse without sleep. I liked this dr.. But no duh! I could have drawn it and explained it in more detail. So now I'm on more meds, but thankfully they are to treat the nerve issues and not a narcotic. Although I would like to get rid of the pain. He told me he could do that...but I'd be sitting in a corner drolling. He will help me get to be able to function through the pain. He said "you have to break the cycle of the circle. So here I am with my sleep cycle broken?! ugh. I usually sleep well. But days like these when I don't, the pain gets uncontrollable.
Last week a little cold almost put me in the hospital as it immediately settled in my chest so I had to get on antibiotics and increase the prednisone. I hate it. I get emotional and can't sleep while on higher doses but it keeps my body stable from crashing and kept me out if the hospital. It could have been because I just had my first Remicade IV treatment that caused the cold I caught to go rampant like that.
My first treatment went well other than being a test subject for a intern that poked me three times trying to do my IV. (Then the nurse had to do it). Next time I'm in pain and someone with a huge needle is looking unsure as they approach my vein... I'm going to say "no". When I'm in this kind of pain a little needle poke throws me off the deep end. The intern "doctor" weaving in and out poking my vein put me in tears. When people are getting treatments for cancer and other serious illnesses, it just doesn't seem to be the place to practice. At least I didn't think so that day. When feeling ok and not so sick I love helping- so don't get me wrong. This babbling, um blogging thing is so much harder than I thought it would be. When you're not feeling well it's hard to get your words down so if someone wants to read it then it makes sense. I get all these great ideas in my head around my amusement park theme, but I haven't been jotting them down. It's hard sometimes to make my illness a fun theme I guess. I planned on blogging once a week but my days blur together and here I am. Just rambling on at 4 am. I figured it was better than tossing and turning.
So... Yeah I'm in pain... Blah blah blah. Ouch. Feels like I'm a burn victim and someone beat my bones with a metal pipe. I actually had two days after my IV treatment where the pain wasn't so bad. I walked into the kitchen one night and stood there in awe because I WALKED into the kitchen without grabbing the walls or furniture along the way! That lasted for two days. I still had to use my cane if I left the house, but more so to keep balance then for the pain. I tend to walk drunkardly and loose my balance for various reasons from low cortisol levels to leg muscles just giving out for a second. So anyhow 2 good days then I started getting sick and I went 20 steps beyond pain I've had before.
I also saw a ENT doc this week since my ears always seem like I'm under water and I get buzzing and my sinuses have been awful for months and months. I see him next week to review the CT scan. Sarcoid can go into the sinuses. But the treatment is all the same so it's not a huge issue to me if it's that. I'm worried if there is damage to tissue or I need surgery. I'm also going to get the results of a allergy test. With my luck I'll find out I'm allergic to chocolate. Maybe I should go to Hershey Park this weekend just incase? Lol
Oh I think I'm delirious from the lack of sleep.
My next IV treatment is this Friday. I'm looking forward to it and hope between that and my six new meds I've taken this week that I will get rid of this pain.
The doc today said that though he knows the sarcoidosis is causing all this pain-When he looks at me I am fibromyalgia patient. Basically everything hurts right now. The blankets hurt my arms that are on fire. My husband lovingly touched my hand and it was pain. Wow. I'm so sad to know that there are so many other people going through this horrid pain.
I am so blessed to have a huge support group to help me through this and keep my spirits up. For example, My Mum- in- law dropped her plans to come to my dr visit. She's been my strongest support with love, friendship, spiritual guidance and true understanding since she battled cancer and is also a retired nurse.
I had those two days a couple weeks ago so I have hope of seeing that again. If not.. This level of pain will become my new 'normal' and I'll be ok. I am amazed at what our bodies/ brain can do to adjust to pain. I've learned my body is a 2 week cycle in most of these "rides". I just want to get off the circle of pain going around and around.
wow. It's 5:30 am. I bet I'll have to edit this crazy rambling- then again I guess that's why I have my blog. This is crazy, sleep deprived, steroid induced me. Lol
I think my brain dumped all it had into this blog so now I shall try to sleep.
I'm going to close my eyes and picture laying in a beautiful field , looking at the clouds and trees. I can feel the hot sun beaming down on me (that crazy hot tingling I have) yet there is a nice cool breeze ( the ceiling fan). Hmm.i may be able to sleep a few hours and have a nice dream of running around in sun on a beautiful summer day. 
I hope you slept. Most of my pain stems around my sinuses and the trigeminal neuralgia I have in my face.
ReplyDeleteI love the theme of your blog. Many times I have asked to get off the merry-go-round. Some days it feels as if I might be off of it and then I am back on it.
Sleep deprivation enhances everything from depression to pain. I know because I have had boughts of it myself.
Stay strong. I wish you well on your next treatment and you blog when you can and if you are in too much pain, don't edit. I think the rawness of your posts are what make your illness real and what will bring us back again and again to see how you are doing.
As far as normal, who needs NORMAL anyway.