bad day

My kidney function number (creatinine) is up to 3.0, and I feel like its time to start planning and thinking seriuously about my future medical course of action. Hospice and a morphine drip seems in order, as I do not want to be a non-functional invalid the rest of my life. I have no real quality of life anymore. My balance has been horrible all day, and i am 100% discouraged. I wish I could start the end-of-life process today, as I'm just so tired of all of this. My plan is to withdraw from most everyone.... no one will notice anyway... and just slip away. Sounds pretty peaceful to me.

Trip back to St Joe's via ambulance

As interesting a day last Thursday was for me.... this past Friday was a doozy. I woke up to shooting, incapacitating nerve pains throughout my entire body on Friday morning every time I got out of bed. I made it to the bathroom (just in time) but then the nerve pains got so bad I had to ease myself down to the bathroom floor. Mom called Rafael, and he got me off the floor and back into bed. Several hours later, I tried to do it again, and only made it to the stairs before I had to sit down. The pains, again, were so bad that I eased myself to the floor. I felt like I was going to be paralyzed. On a scale of 1-10, the pain was a 15. Mom called 911, and the fire department showed up first, and then the ambulance came and took me to St. Joseph's. I spent 3 days in there getting high dose steroids, and I have had only 1 minor "nerve" episode since.... that was this morning. BUT... nowhere as near as bad as last Thursday and Friday. More medicines have been added to the pharmacy I already take in order to calm these hellish experieces down. Its the most terrifying thing to go through, and I hope they dont come on again. I only get a few seconds warning before it hits. I cant imagine what I would do if I was out in public... I'll be a crying/raving/emotional basketcase for the next week again while I taper the steroids back to my normal dose. Thats a nightmare in itself. Trying not to be sarcastic here, but according to certain family members... "I"ve been through this before, and it should all be a piece of cake, right?" Wrong.

2nd opinion at Emory Hospital

Mom drove me down to Emory this morning, and it will be a morning I will never forget. She parked the car in the deck, and we tried twice to start walking the distance to the elevators. I was not feeling well, and so each time we got back in the car to rest a bit. She drove closer to the elevators, and was going to let me out while she parked again. Well, all of a sudden... this nerve attack hit me over my entire body. It was so severe that I thought I was about to be paralyzed, and my next thought was that I was about to die. I was holding onto a concrete wall, trying not to fall, when there appeared a voice in my ear and an arm around my waist. I was crying and trembling and shaking, and I could barely walk. The young man helped me walk to the car, and all the while, he kept repeating in my ear... "You're ok. I've got you. I wont let you fall. I'm right here." He was an angel sent from God. That was the worst attack so far since these symptoms started. Finally, we got the bright idea to valet park, and Mom was able to score a wheelchair. The doctor spent an hour with me. He agreed with everything Dr Kiely has been doing thus far. This guy is a long-time professor at the university, and he was so helpful and informative. He said not to worry about the "attacks" I've been having, as its just the nerves talking to me. It means they are irritated. Rafael and I have been thinking it was a bad thing, so at least that was clarified. I was so tired when I got home that I took a huge nap. Had to cancel dinner plans with Rafael and his Mom. My phone has not been working this evening, so I'm hoping to see them tomorrow before she leaves town. I miss her, as much as I miss her son.

eye doctor day

Mom drove me to a special neuro-eye doctor this morning to see about my eyes being "all wobbly in my head." He seemed perplexed, and wants to do blood work and a brain MRI to check out a few things. I had only a few hours of sleep last night, so I napped the rest of the day away. Tomorrow morning I have a 2nd opinion appointment with Emory Univ Hospital for my CIDP diagnosis. Dr Kiely wants the approval of academia, and so we are off again at the crack of dawn for another trip downtown. I wish Rafael was taking me. It seems he really calms me when I'm at the doctors. I cant ask him to be there for me for everything though, especially when he wants his own Life now without me. I need to call him, as I just found out his Mom DID come to town. I will tomorrow.... after the appointment. For now, I've got to get some sleep. I'm just exhausted.

another sleepless night....

...at least, this night I'm not crying my eyes out. I'm doing really well on ebay this week. Yay! My walking was much improved this morning, but then all hell broke loose in the afternoon... and my balance went to hell in a handbasket. I fell for the 10th time. At least, this time, it was on carpet. No injuries. I havent had the shooting nerve pains from my feet to my torso in a few days, so thats a good sign. am i improving? i think the doctor is right. the progression of the disease has halted. Now, we're just waiting for healing to take place. I'm in limbo again for the 2nd time this year.... how much crap is God going to throw my way this year?

new art

Here is BoBo the Black Christmas Cat! The latest in the the BoBo series (3rd piece). He's so cute that I'm thinking of turning him into a children's book. He's on auction right now on ebay, so catch him while you can!!

i cant sleep

It's 3am, and I've been crying every time I lay my head on the pillow to go to sleep. Rafael picked me up at noon yesterday, and we went to lunch. He helped me walk everywhere which was great. I do much better if I dont have to focus on walking and balance at the same time. It still is a great effort to get anywhere. We had a good conversation, and a lot was said that was new. Productive... We made it in time for the doctor's appointment. Rafael was SO helpful and loving and caring. He really came through for me at that appointment. I was a bundle of nerves about what the doctor was going to say, and had it not been for him being there... I would have left that office without my needs being met. Dr Kiely said since I didnt respond that well to the 2 IVIG treatments, I'm probably going to always "know" I have CIDP. He feels that the progression has been arrested, and now we have to wait and see how well the nerves are going to heal. He is trying to get me and keep me functional, instead of winding up bedridden. I dont know yet if I will be able to return to work. I have to wait another 2 weeks to see if I continue to improve before he tries the next round of treatment which is high dose IV steroids. If they do that, he is sending me for a PICC line beforehand. - I had the feeling back in February with my leg wound that "this was the beginning of the end."

my marriage

My marriage is officially over. Rafael came over today..... its our 3-year anniversary.... and he said his decision is final. There's no room for making it work. He doesnt have a clue. I sat there and listened to him speak for 1/2 an hour as to why.... there is no why. He's a lost soul. I still and will always love him... I've lost my faith in people in general. How can someone make a promise to God, and just walk away from everything? I never stood a chance in this marriage. He never loved me in a true sense. I was living in a dream world. All of my hopes and dreams have been destroyed. My spark is gone...... especially due to this CIDP crap. There's nothing left for me. I am just killing time....

new cat art

Here's a new piece of art that I drew back in April when I was in orientation at Kennestone. I finally finished it! Just like me to take my time with everything.... Its available on ebay in my store!

slept again

I slept again all day again. This fatigue is overwhelming.... All I feel like I wanna do is sleep. Maybe tomorrow will be a better day. I dont feel very purposeful.... this just isnt gonna fly.

wiped out

I drove to John & Jodi's house yesterday afternoon to paint with Jodi. It was so nice to do that with her again, and it brought back memories of our many late, late nights we stayed up painting at their old house. I only lasted 4 hours, as it just wiped my energy out. I have slept all day today trying to recover. They werent kidding when they said extreme fatigue is part of this CIDP crap. I'm hoping tomorrow will be a better day. I see the doctor this coming Monday, and Rafael is taking me.

getting deparate

I'm running out of time and money from my last paycheck from my job, and i wont be able to cover my bills at the end of this month. the doctor, like oncologists, seems to be so optimistic that this conditon will get better. well, after 2 months, nothing has changed, and i'm still not able to take care of myself properly, much less hold a job at htis point. I know they say... God will provide.... but I dont see money falling from the sky in order to help me. I dont have a clue what i'll do... or a plan for that matter.

and they wonder why...

Since last night, every time I stand up... I get shooting nerve pains from my feet up into my torso. It feels like I'm about to be paralyzed for the minute or so that it lasts.... and then it subsides when I lay down or sit in a chair. I am down to 15mg of Prednisone for the next couple of days before I go back to my regular dose of 10mg. Something isnt working right, and it feels like the disease has not stopped the progression of nerve damage, based on my continued symptoms. If it doesnt subside by tomorrow night, Dr Kiely's office will be getting another phone call on Monday morning. When the attack occurs, it almost renders me powerless over my own body. Its a terrifying feeling. I also learned today that my eldest sister.... in another angry phone call, several weeks ago, to my mother where she hung up on her for the millionth time.... told her that my "conditon" wasnt "all that bad", and that I "was faking it." I wonder how she got that notion since she hasnt even called or been around to see for her own eyes whats been going on. People just amaze me. That is one of the most stupid and hateful comments I've ever heard come out of her mouth in a long time (there's been plenty). I do know this. She had better watch what she says, as words are powerful. The universe has a funny way of making someone learn empathy and compassion for others the hard way... especially when they are completely clueless. I have lost my faith in others. I've lost my spark. I'm just killing time until I can get out of here and go home. Thank God for my Mother.... She is the sole reason why I'm still here. Although I am wondering daily why I still am...

Another fall....

I fell again today for the 7th time since this whole thing started. Luckily, Mom was near, and she helped me up off the ground. I dont go again to the neurologist until July 24th.... if I need more IVIG, they will have to put a central line in. I dont have any veins left to stick, as they are all worn out from the 2 previous treatments.

Recovery from IVIG

Today was Day #1 post-IVIG, and I slept half the day away. The nurse reused the IV needle on the last day, and both my arms are swollen and bruised and feel infected. She stuck me a total of about 8 or 9 times over the 5 days of home infusion. I'm worn out, and dont have much energy to do anything. I have noticed my balance is better. The strength in my legs is a tad better, but nowhere I need to be for fully functional purposes. My feet are still numb, and I continue to slap my feet when I walk at a crawl pace. I need a few more weeks in order to get back on my feet before I go back to work (if I can). I'm hoping my manager will give me the time, so I wont have to reapply in the future. I need to keep the faith that I will overcome this disability...

The Nurse & the Elders

Shirley, the home health nurse, came to the house yesterday to infuse the IVIG. She had to stick me 4 times to find an IV suitable. Thank God it lasted the whole treatment, but its starting to feel tender this morning so I dont think it will be good enough for 4 hours today. There arent any veins left to stick.... am I headed for a central line? Yesterday was nice in the sense that while I slept during the infusion.... Shirley, Mom, and Nancy had a tea party. It made the time go much faster. ....... Nancy took me to the laying on of hands at the church that morning. It was the first time I felt a sense of peace about this nerve condition. We boo-hoo'ed the whole time. The 2 elders were so nice, and afterwards they both helped me walk out to the car. My legs were about to give out, and I was so wobbly from the long walk. I'm really hoping this round works.

2nd day of IVIG

I slept another 4 hours while the medicine infused. IVIG is very venutoxic, and so my IV lasted only through the 2nd dose. I was able to take a really good shower when I got home because it was out. The nurse comes at 1pm to the house tomorrow. Nancy and I are going to the church tomorrow for a healing session with the elders. ... I dont have my own place anymore, so there is no need to keep any of my own folk art up on the walls in the "gallery." I will be listing pieces that were near and dear to me on ebay. I'm sad t0 see them go, but out with the old and in with the new... as they say. Here's one I listed today.

2nd round of IVIG

Mom drove me down to the infusion suite today to start my 2nd round of IVIG. They did not have nursing coverage for today and tomorrow, so home infusion will begin Sat, Sun, and Monday. I had to take a premed of Tylenol and benadryl, so I was zonked the entire time and slept through most of the infusion. It lasted 4 hours, while it was 6 hours when I was in the hospital. (different strength) We have to be there at 9:30am in the morning. Saturday, my friend Nancy, scheduled a "laying on of hands" at a church where the elders pray over you and anoint you with oil to help heal you. I am looking forward to it since I had the same thing done right before my first transplant from Kelly Todd's father. It was an experience then, and I know it will be moving this time as well. I 'm hoping this round works, so I can get back to work asap. My life's calling is though my job, and i dont know what my purpose is other than to help heal others if I am not physically able to do it. This whole thing just doesnt make sense.

Our Lady of Guadalupe

I fell in love with Our Lady of Guadalupe when I was living in Las Cruces, NM as a travel nurse for 6 months back in 2003. The story of Juan Duego and her apparition is soulful. I carry Our Lady's rosary beads in my luggage when I travel, and I have a small, silver statue in my car for safe passage. I slaved over this piece trying to get it "just right," in order to pay tribute to the mericful Mother.

and more...

http://www.kidney.org/atoz/atozItem.cfm?id=28

more helpful info

http://www.mywhatever.com/cifwriter/library/mortals/mort2513.html

CIDP info

I found a web site today that had rich amounts of information about CIDP, including forums for personal discussion (message boards). The msg boards were more helpful than anything I've read on the internet thus far. I dont know how to approximate success vs failure stories, as it appears that the people who are doing "fine", arent posting to the site. From what I HAVE read, this an unforgiving disease, and many people dont have much quality of Life. http://www.gbsfi.com Each person reacts differently to treatment, and there doesnt seem to be any indicators as to how a person will, or will not, respond. So far, I have not responded to increased steroids and the initial dosing of IVIG. Combined with looking at end-stage renal failure once again in the near future, as I have 25% renal function, left... I dont doubt what my course of action will be when faced. Absolutely nothing. This party is going to end for good soon... just a matter of time.

Mermaid Art

A pink-haired mermaid for your viewing pleasure available in my ebay store!

kindness of strangers

I am in awe at the kindness and empathy from strangers.... I never realized how many people out there are suffering and can relate to hardship, without having gone through exact circumstances. Why is it that some people have TOO much of a clue, and some people dont have any?

legs

Walking was a tad better today, although not by much. If I had to go back to work today, it would be a no-go. I'm about to do my 2nd set of exercises for the day. On Wednesday, it will be 2 weeks since the last day of IVIG.... as Rafael mentioned this morning. I'm curious as to how long it will take to work... This condition seems to be very rare, and there isnt a whole lot on the internet about it... but I DID find the CIDP Foundation treatment page. I'm going to print it out to take to my next appointment. It's weird looking at the world from a disabled person's view... everything is an obstacle and tripled effort. I dont know how Christopher Reeves did it.

New art

I actually sketched this one several years ago, and finally got around to painting it over the last few weeks. Talk about procrastination..... enjoy.