New Treatment Starts TODAY

Today is the beginning of something new.

Today I start on Remicade. There are brand new studies that show it works on Sarcoid AND RA patients. Since those are my two demons, it sounds like a perfect match. I am HOPEFUL. It's kinda funny, Michael came to me with info on Remicade at least 6 months ago and urged me to look into it. At that time, there were no studies out on Remicade for Sarc, plus my Dr. was concerned about infection, so we didn't try it. But now I've survived a round of Embril, which didn't help my disease, but at least didn't make me sicker. So my Dr. feels more comfortable putting me on Remicade. So we start TODAY. The insurance company is covering it, so all I have to pay is $30 per visit. The way it works is I go to a clinic and they run an IV for 3 hours. That's kind of a bummer, but once it gets "going", I'll only have to go to the clinic once every 8 weeks for an infusion. The other good thing is the clinic is at St. Josephs, so we don't have to go downtown every time. Maybe in a few months I can even drive myself there and back!

It feels good to have hope.

And it's bright and sunny outside.

Confusing

Very Confusing

I've started the slow slipping down off Prednisone again. There must have been some people praying for me because we all made it through this round pretty well. But the taper down, now thats tricky. Everything is surreal and I fade in and out of life. So much of the time not feeling anything except the pain increasing as the pred decreases. Your voice bounces around in my head mixing up the words in a jumble until what I hear is not what you said. The other voices are there too, calling me, always calling me. The tradeoff is in full swing now. I don't have enough pain meds. The pharmacist treats me like a drug addict. I sit in silence. Is there anger in there? Will it come out some day? What did I just say? Was that me or you? Where is home base and can I ever get there again? Ah, HOME. what a word. what a place. what a feeling that must be, to be HOME.

Crazy

Crazy
Ok, so where do I start?
Of course, I woke up feeling like hell. Chest pain unbearble. Popped a few pills, drug myself to the car and took Amanda 1 mile to school. Nearly hit two bushes on my own street driving back, I was so dopey.

Checked on mail from yesterday. Liberty Mutual wants tons of forms signed, plus the names, specialties, address, phone, fax, and treatment dates of all doctors I've seen in the last 2 years. That took 3 handwritten sheets. Jst a little light research to start the day. I understand they have to be vigilant; there are so many people who take advantage of insurance companies. But at some point I wish they could put you in another "non-crook" category and treat you more humanely. All this does not help my recovery.

Logged into eBay. Was I surprised to see hundreds of motorcycles listed under my account! And ll listed with premium features, costing hundreds of dollars charged to my account. So I'm on it. Trying to right the wrong, erase the bad listings, regain my credibility, and most of oall prevent financial damage.

Spent HOURS online with eBay to fix it all. Had to change my eBay password, my e-mail password, my Merchant password, my banking passwords, my blogger password, my Shopping Cart password, my paypal password, my hello password. And I'm sure there will be many more. Now lastly I have to relist all the 'goood stuff' manually on eBay.

Got a call from Emory during all of this. Of course they want their money. Of course they are entitled to it. Of course I don't have it. More stalling and apologies.
Then a call from UTHC. They want their money too, although they just want $500 and they'll be off my back. Of course they deserve it. Of course I don't have it. More stalling.

A horn is blowing outside. It is Lili, coming to take me to Will's teacher conference. I can't drive that far. So I lumber out, full of dread. What will it be this time? How much positive? How much negative? How much presure to put him on meds? There was a detour so we were late. Michael was already there. Yep, mostly negative. And the meds came up again. I'm tempted to do like a 2-3 week trial while he is still in lower school to see if there really is a difference. Will talk to Kathy next week about it.

After the conference, which lasted 30 minutes too long, it's off to the dentist. We were 30 minutes late so they couldn't take him and I had to make an appointment for next Tuesday. So Lili took us back home. By now I'm a basket case and throbbing from head to toe with pain.

At home, I pulled out RatRace and sat down in the den to watch with Will. Amanda came in and promplty removed the video (it's hers) and said it was totally inappropriate for Will. He starts crying and the next thing I know its all about how he hates Mill Springs. Doesn't want to go back there next year, on and on. After about 20 minutes I can't cope with it anymore and go upstairs and lock my door. I pop all of my NIGHTIME meds plus a couple of extra for good measure and close and lock my door. I put in my ear plugs. Maybe I won't wake up.

But alas, wake I did aorund 6:00 to heavy pounding on the door. It was Will. "Can I play with Mickey?" Sure, after you write the 10 commandments on these yellow sheets for your Wed. night homework assignment He does it in less than 5 minutes. I've been trying to get hin to do it for a week.

Michael comes home. He heads around the side of the house to get the DEAD CAT and bury it. Yep, one dead cat laid there under the Kitchen Sink Window. Will found him yesterday. It was truely traumatic. It was Will's new adopted pound kitty, and he was such a sweetheart. Something got him and he died. He was gone for 5 days, then Will found him. The dogs were playing with him like a ragdoll. I had to pick him up an throw him over the fence. Then Michael had to bury him today. Will wanted him buried near the tree that it (Rufus) climbed and stayed in for 4 days, before we paid a tree climber $250 to bring him down.

Now the're all off. Amanda at explorers. Will and Michal at Scouts. Maybe a little sanity for awhlile.

Just another day at the Allen house.

I might have some hair left, but if I do it's surely grey.

A CHOICE

A Choice
There was a choice to make.

The unspeakable pain started suddenly in my chest about a month ago. When I awoke my entire chest felt like glass and movement felt like shards cutting deep through my body. Rising from the bed was and is horrific. After I load up with narcotics, the pain settles into one single long dagger cutting through my lower right rib cage. Excruciating. The Oxycontin doesn't touch it. Neither does the Vicoden.

So the Dr. says go on 40 MG Prednisone. I resist. Stubbornly, I hold out. I hold out because I want to be alive and to be loved and not alone. I want to laugh and make art and music. I want to see beauty. I hold out because I have done that before and it changes everything. I begin to cry out in pain. I can no longer hide it. It engulfs me. It becomes more and more evident that the ER is in my near future to get relief. I think about the hours of waiting, sitting in the middle of God knows what germs with my immune system already totally shot, and having to drag some family member through it all. Then maybe some Morphine, maybe a little relief, but in the end the same old dark friend would be waiting for me: PREDNISONE.

So today I made the inevitable choice. Went up to 40 MG on the Prednisone. What a horrible chemical. The pain level is already different, but still extremely bad. Maybe tomorrow it will be less. Meantime my broom has come out of the closet. I am like a stranger to myself. I look in the mirror and I don't see a wife, friend, daughter, mother. I see a deep dark pit of pain, sadness, and rage, murderous rage; like a dark force has dug its claws down deep in my soul and rooted itself in. Like it wants to stay there forever and evict me from my own soul, my own life, my own mind. It mocks me, laughing at it's strength and my weakness. It's power is staggering, its' purposes pure evil.

Life is going on around me, I know it is. But I am unplugged, there is a ditch deep and dark and wide and inpassable and I am alone on the other side of it.

No not alone exactly.

I have my PREDNISONE.

The Next Thing to Try

Ok, so we struck out with Methotrexate, Antibiotics, and Embril. Now the doc says we should try Remicade. So I'll be starting treatment in late March or early April. This is a drug that shuts down your immune system (like MTX and Embril), but in a different way. It has been in use for RA patients for some time and there are now studies showing it can be successful for SARC patients. Thats me, a double winner. So the doc seemed excited to try it. I don't even want to read the side effects; maybe if I don't I'll have a more positive attitude about trying it. For today, my goals are to stay ahead of the pain and be kind to people around me.