Day 3049

It's been 8 years, 8 months and 4 days since October 6, 2005, the day I was finally diagnosed with the chronic pain I had been suffering since the middle of August 2005. The diagnosis has been refined and clarified since then, of course.....it started out as "chronic migraine" and now is much more. 

The official diagnoses now are as follows:
chronic migraine
right-sided persistent idiopathic facial pain
occipital neuralgia
allodynia
sensitivity to light (photophobia)
sensitivity to sound (hyperacusis)
constant ringing in my ears (tinnitus)
fibromyalgia
PTSD
OCD
major depressive disorder


These multiple diagnoses have led to other diagnoses, of course. I've developed an exercise intolerance due to the sensitivity to sound and light, and that has led to the fibro as well as to a bad knee on the left and to plantar fasciitis on the right. I'd love to just exercise like I used to but it makes me hurt so much, it's hard to even get motivated. I do better if I can bear to get on the exercise bike and do a few miles 3-4 times a week but sometimes it takes everything I have just to get from morning till night. I also have obstructive sleep apnea as a result of gaining weight because I can't exercise like I should. Due to my latex allergy and my claustrophobia as well as the pain in my face -- not head, but face -- and the fact that pressure on the right side of my face leads to more pain (the allodynia) I can't wear a CPSP, BiPAP, or miniPAP. This means I'm also seriously sleep deprived and will probably have to stop driving in the next few years so I don't nod off while I'm on the road and get in an accident.

I've developed numerous drug allergies and because of that I can only take a small number of meds to control my pain. The most efficacious long term pain med I can take, and do take, is methadone. I know it's been associated with heroin withdrawal for a long time, but for a long time before that it was used for chronic pain. It has a long half-life (the amount of time it takes to clear out of the body) so I don't have to take it every 4-6 hours like short-acting narcotics, and since I can't take any time-release drugs due to my previous gastric bypass, I can't do oxycontin or MS contin or any of those. I also take Lexapro to help with the nerve pain. Don't ask me how it works because I haven't got a clue. I just know that if I'm not on an antidepressant it feels like someone has split my scalp and peeled it back kinda like you do an orange, and the nerves on my head are all way up there at the top and someone is stomping on them with spiked boots. It HURTS. It's unbearable. I just can't handle it. I'm glad the Lexapro helps; really, I am. It keeps me functioning together with the methadone. Before we found this combination I spent an awful lot of time lying on the couch in the dark, asking God to help me make it, counting the hours till I could have my next dose of Vicodin. It wasn't pretty.

And before you wonder -- no, I am not pain free. The methadone doesn't work like that. Besides, if I had enough of it to make me pain free, I'd be dead. It has a few side effects, one of which is extreme sleepiness. I'm taking as much as I can without bordering on Rip Van Winkle status. Fortunately, it's enough to help me stay functional to a pretty good degree. I keep the house pretty clean, though not as clean as it used to be; I can shop and cook and sew and take care of the cats and even have my grandkids over for the night. I can't always drive, and I'm smart enough to recognize when I'm not safe on the road. My hubby is great about either taking me to the store if I need him to or, on bad days, going to the store for me and getting a few things. I run pretty consistently a 5-6 on a scale of 10 as far as pain goes. I have meds for breakthrough pain, meds for migraines, and if the migraine pain gets too bad for the Maxalt, I have the option of going to the ER and getting a shot of Dilaudid in my butt.

I haven't had to do an ER run for a couple of years now, thank goodness. I was getting downright messed with by the local ER -- they accused me of drug-seeking behavior and actually at one point refused to treat me until I got up and walked out, at which point they tried to talk me into staying. Needless to say I left. I told hubby if I was going to feel like death warmed over, I could do that just as well at home. It was at that time I became ashamed I had been part of the medical profession. I also fully realized how genuinely chronically ill people are mistreated in Emergency Rooms and doctor's offices and even by the general public, especially if the illness is invisible. They can't wrap their heads around someone who doesn't *look* sick being sick, and because they can't accept it, they decide it's a lie and they treat the ill person like they're a liar. They're rude and they get ugly if you have to cancel another party or gathering or if you have to leave early because you can't cope with the sounds of happy people making noise....sometimes that noise is more than I can bear. It makes me want to beat my head against the wall. Considering how much my head hurts, that's pretty intense, don't you think? My own mom told me I needed to get out and get a job -- that staying at home all the time wasn't helping me at all and that I needed to stop feeling sorry for myself and get back to work. She, like many others, didn't get it. I think by now she's starting to see it's not as insignificant as it looks, this chronic illness thing. It's draining and demoralizing and depressing and discouraging and if you're not really careful it will suck the life right out of you.

I don't know what I'd do or where I'd be without my faith. I prayed almost constantly for a very long time, and I pray off and on all day long even now. My faith in God, my trust that there is something better waiting for me in Glory, my hope that what I'm going through isn't for nothing....it sustains me. It gives me a reason to get up in the morning and to keep on putting one foot in front of the other. My relationship with God is up close and personal. I've experienced personal salvation; I've received the baptism in the Holy Spirit; I speak in tongues; and it is my lifeline in a world that sometimes overwhelms me. God is with me every minute of every day and knowing He is walking this with me makes all the difference in the world. Knowing that He sees and knows what I'm going through lightens my burden. Knowing He was there when I was younger, knowing He had things in His hands, kept me going through the abuse and molestation I endured as a young child and young adult. I knew in my heart that He was holding me when I felt so alone that I almost lost hope. It's hard being a child who's being abused and nobody believes it. It's hard being blamed for things that you have no control over. It's hard when your caretakers betray you either by violence, neglect, or abandonment. It affects who you are then as well as how you grow up. Leaning on God and Jesus is the only thing that really helped me when I faced the taunts, the accusations, the blame, and the isolation that being abused leads to. God taught me about love, and I owe Him my life as well as what sanity I have today. I can't put into words what my relationship with God means to me. There aren't words to express it. He is such an integral part of me that if you tried to separate us I'd die. I'm blessed that He didn't leave me to myself but instead made sure I came across the right things in the right time that led me right to His heart, His arms and His love.

Well, enough for today. I need to try and get some sleep before it gets too light out. Besides, one of the cats just left me a present in the litter box and I need to scoop it before I asphyxiate.

God bless and keep you today and in the coming week.