close call

LONG HOT SUMMER
Originally uploaded by BIG CHIEF'S TRIBE.

As the day wore on into the evening, I found myself getting weaker and weaker. I usually am wiped out from IVIG, but never this bad. I was having to lay down on the floor to rest in order to crawl another 5 feet,.....trying to get to the bathroom. Finally, I got so weak that it felt like my life force was draining away. Mom called both doctors. The kidney doctor said to take 10mg of extra steroids (which we did right away). The neuro doc said for her to observe me and then "make the call" to go to the ER tonight or not. I started perking up during the 2nd phone call, and feeling much better. The more time passed, the better I felt. (The steroid) was kicking in. Whew... saved me the cost of a hospital visit. Tomorrow, I am splitting my 10mg pills into quarters, so I can taper even more slowly. Its the only way I know that will work. So, that was our sassy Wednesday night. I hope we have a really boring night on Thursday. Mom and I are long overdue for some peace and quiet and worry exemption.

just had to share this!

doggycreche
Originally uploaded by poedelplezant.

One day.... when I get my legs back.... I'm going to build a 1-story, 3-bedroom house, with a fenced in yard so I can have 2 apricot standard poodles. I found this picture on Flickr 2 nights ago, and I mustve started at it for 20 minutes just dreaming and drooling. These dogs are just beautiful!

more up and down

Monday I woke up feeling much better, but still with the excess fluid issue going on. Knowlton and Kiely are aware and have spoken at length with each other, but when they talk to me... they put it back off on the other doctor. My CREAT turned out to be 2.5 (yay!!!!) and they said the fluid retention was from the high dose steroids. I am to start tapering back down to my normal maintenance level, and they will try anoter immunosuppressant. Last time they did that, I got pneumonia. I have not been able to get down past 40mg of Prednisone due to those damn "nerve attacks." Yesterday, I dropped to 30mg, and they started back up again. I only have a few seconds warning, but if I'm near a chair and sit down fast enough, I can nip them in the bud. Its just when I'm going from place to place and they start... its a nightmare. I can handle the little ones, but when they get going full force... I feel like I'm going to be paralyzed, and then my next thought is... "I'm gonna die." I use the walker all the time now. I dont feel safe without it, as I've fallen 34 times since May 15th. I've got bruises everywhere, and a BIG, nasty bruise on my shin that hurts if you even glance at it. The home health nurse came today for the first of 3 days of IVIG, and as usual.... I am totally wiped out. Thursday and Friday will be repeats of today, and then it will take 4 to 5 days to start feeling better/recover from getting the drug. Mom has been a complete angel... taking care of every need and being so patient and loving. She took me Monday to obtain a wheelchair, so I was not housebound anymore. It was so nice just to be able to go to Walgreen's and shop by myself in the wheelchair, while she did her own shopping. Freedom is everything. I went too long without IVIG that it was getting almost impossible to move around, get out of chairs, etc... I have been doing a lot of crawling (like an animal) from place to placee. I am getting really good at figuring out ways to get myself around without calling for Mom every 2 seconds. Creativity is working in my favor here. Other than all that.... I'm really wanting a Maple Syrup or Vanilla Yankee candle for my room. I dont know why I'm on a Yankee Candle kick... maybe steroids dont just cause food cravings! :)

medical update - for Saturday

Country Girl - folk art
Originally uploaded by folkartblonde.

I'm getting weaker and weaker in general by the day. I cannot go anywhere without the walker for the past week. Today was the worst its been so far. I'm moving at a snail's pace. Only fell once, and thats because my legs buckled and I slumped to the floor. (32 falls and counting since May 15th) Its getting hard to breathe normally, but I know I'm still behind the line in the sand. I doubled up on my Bumex yesterday and tonight in hopes that will help keep the excss fluid out of my lungs. So far, it has, but my feet, ankles, and legs look like tree trunks. Mom put a bedside commode in my room for tonight, so I wont subject myself to falling on the way to the bathroom tonnight. I had a long list of things to do today, but I was too weak and had zero energy except to sit up for a while and take naps in bed. If I can just make it till Monday, I could avoid an ER charge, and hopefully be a direct admit from home on Monday. My biggest fear is that they will go ahead and put me on dialysis. I'm not ready for that prison sentence yet. Crap. Would I ever be?

Weave art from Flickr

Weave
Originally uploaded by zunehmen.

How cool is that?!?!

Will you look at this??

Door to ohm
Originally uploaded by Jaxs22.

I found this on Flickr, and I just had to send it to my blog. I;m craving a trip out west, particularly northwestern, NM and northeastern, AZ. There are so many things I still havent seen yet! ....... I love all the warm tones of adobe and bright colors they use as accents everywhere you look. Very charming!

A Meeting with Rafael

Day of the Dead ACEO - Eternal Marriage
Originally uploaded by folkartblonde.

I visited with Rafael today. It was our first official discussion about how we are going to divorce. Very emotional. A lot of crying. Exhausting. Productive. Sad. We ate dinner and shared a piece of cheesecake. I got a few things and then he took me home. I wanted to share this piece of art (again) not for its relation to the Mexican holiday, but as a symbol of the "death" of my marriage. It appears that I will not be allowed true happiness with anything for any length of time in my lifetime. Maybe next time around..... Rafael got a good view of how bad I am doing with mobility these days. The walker is my best friend these days, and I'm afraid to walk without it... even though I had 3 of my worst falls WITH it. In my head, I'm having a ping-pong match about how really worth it is to stick around in fucking miserable torture. One day I'm up for it, the next I'm not. Mom has been on my case and VERY negative for 2 days in a row which is not helping. She's running out of steam probably... I dont know how well I would handle watching my child's body deteriorate before my eyes. She's been having chest pressure as well. I finally convinced her to "let me experiment" on her and I gave her a Nitroglycerin. Chest pressure went away, but she's sure its not her heart. I've only been doing cardiac nursing for 15 years, so I guess I dont know what the fuck I'm talking about. Last year, her EKG and Treadmill were negative. So what. Gross tests provide gross answers. I guess she doesnt know how many lives I've saved in the hospital after a "normal" Stress Test and EKG. I want her to have a cath. She's already declined. Maybe John can have some input on this one. I'll call him tomorrow. I'll feel much better IF I'm wrong, then IF I turn out to be right.... and its too late. I wont even bother Kathie with this. She's probably too busy leafing through a sales catalog trying to figure out what set of china to buy for a dinner party...... Or averaging the last 5 years of Blake's touchdown scores. And Lisa? I wouldnt want to interfere with opening her 10th bottle of wine for the night celebrating how much she took her own Mother for a "fuck you and your golden years" ride. Definitely, I'll speak with John. At least the sanity factor is balanced out in this family somewhat. I'll stop there.

Elementary School Teacher - folk art

Elementary School Teacher - folk art
Originally uploaded by folkartblonde.

School is back in session. Rafael and Nancy are working with the same type kids this year - Behavioral Disorder (BD). I hope they can repair their friendship as soon as possible. In the meantime, this folk art piece was painted in tribute for all of the hard work teachers do for our nation's children. Available on eBay at the moment, but will be moved to Etsy.com this weekend. Enjoy!

Tuesday was the pits

During the night, I fell really hard TWICE on the way to the bathroom. (31 and counting) One time was especially bad as my walker got caught on the rug. Next thing I know... my entire body slammed against the front door right smack dab into the artistic glass panes. I tried to catch myself, but then I slammed again into the glass panes and then slammed down on the floor. "Slam" is a very accurate word to use here, as again, it felt like I was in a car accident 3 times last night. I broke 12 of the panes in the front door, but I, my person, escaped any of that this time. What was so frustrating is that I usually can crawl to a chair or my bed and hoist myself up into a sitting position again. Not so, last night. I finally figured out that I COULD crawl to the stairway and hoist my butt up to the 2nd step.... which is a frequent resting place for me when those dang nerve attacks come on. Mom didnt hear a thing, and even if I had called out to her.... there wouldve been nothing to do. I had to do it somehow. And, last resort would be to call Rafael. He has enough on his plate right now then dealing with my crap, too. I wont go into how the rest of the day went, but nevertheless... it was miserable. I'll just stay in my room as much as possible. Realism is one thing. Constant negativity is another ball game, and it completely wears me out. In fact, I was so disgusted and frustrated by the end of the day.... I changed my mind again. I HAD a momentary/7-day lapse in clear judgement.... thinking I COULD BEAT THIS DISEASE and get ready for a 3rd kidney. After today, whats the fuckin' point? Something good needs to happen very soon in my Life, or I'm just not going to have the will to make it. The home health nurse comes tomorrow at 3pm to check my PICC line dressing, and then Rafael is picking me up for an evening at the house to talk. He called tonight. We both cried. I wish things were different. I'll always love him, and I want him at my side when I die.

quick update to last post

Make that 29 falls. My legs gave out and I fell backwards. I hit my head, but it landed on carpet... thank God. I tried 4 times either get in the chair or bed and I just didnt have the mucsle strength. I called Mom who helped ink the chair. I dont know what I would do without her. She's a God-sent Angel.

Grandma Napping - folk art

Grandma Napping - folk art
Originally uploaded by folkartblonde.

An original (5x7) by Amy Jordan available on ebay as we speak! Catch her while you can!

playing blog catchup

Last week was a total wash... I didnt feel well at all, and I was having a hard time getting excess fluid out of my body. Also, the nurse came back to the house to give me more IVIG Wed, Thur, and Friday. She's SO nice, and she taught Mom how to flush my PICC line. We do great as a team, and I've decided to give Mom the honorary title of "RN" while she's flushing my line on a daily basis. :) The nurse comes back on Wed morning at 9am to teach Mom how to change the sterile dressing. Mom's been a 100% trooper throuigh all this, and I know she's going to do just fine. I think the doctor waited too long to give me more IVIG, as I'm not getting any better, but worse. Even though I refused in the beginning, the walker has become a daily part of my life now. Some days, I dont know what I would do
without,,,just getting around in the house.

Here's a little strory that happened this morning..... the night before, Mom and I started cooking a whole fryer chicken in the crockpot - which meant by 7am... I was to turn off the crock, let it cool down a bit, and then pick the meat off. (i've done it 100 times when I lived with Rafael.) Sooooo., I got the bright idea of
going to help Mom out with laundry. I'm on my very first transfer of wet towels to the dryer, and since I'm using the dryer door for support for my balance.... it swings out, therefore I swing with it, and I landed square on my butt on top of some scales. My whole bidy felt like I had been hit by a truck, but then again, thats how it feeels everytimg. That was fall #28 since May 15th. There was no way I could get up in the laundry or kitchen, so I overturned a bathroom rug, and crawled/inched my way to he den where Mom has a sturdy black computer chair. I was able to hoist myself on that to a sitting poisition.... rest a minute....after that.... I gave up on my ramdon chore of kindness,,,, and just picked the chicken instead.

I noticed today that since I didnt sleep well, and i also got up early.... my body went into shutdown mode, and I barely had anymuscle strength in my legs. This has happened before when I unpacked the 4 boxes brought over and we stored in my room. It took me 1/2 day, but THE NEXT DAY...I was a waste case. I've to get on a good seeping routine,,,otherisw I'm, going to always be dependent on someone. Thats just not me.

Also, I can tell that my depression is slowly lifting, and I can focus and concentrate a little better. My art, ebay, etsy, and joining FLICKR has been occupying my time. I moved my entire store to aution due to the cheap sale for store owers. I'vebeen checking everyday as my auctions end Wed night!!!

I have 3 commissios this week! I'm trying to get them all done by this weekend. Hopefully! Andrea's is 75% done. Ginny's is sketched out, and I'm starting the painting tomorrow. Beth's flower only has the back painted, and thats the one I need to go to Home Depot for. All of ebat and art money is going to pay Mom since she paid for the movers, and 20 million over things since came back to live her. I think she likes me being her, even though I've got a lof "safety" and "sleep" issues right now.

More later.... I'm so tired.... need sleep

hippity hop bus

hippity hop
Originally uploaded by radhapetal.

I found this flower power VW Vanagon on Flickr. This is perfection!! Especially it being in the desert...

Thursday

Mom took me for my Brain MRI to check and see if there are aliens running around inside my head, God, I hope not. I was having a difficult time walking from the visitor parking lot even with my arm over Mom;s shoulder, when this nice lady appeared and helped from the other side so I wouldnt fall. My feet were starting to drag, and I knew I was gonna hit the pavement had that Earth angel shown up when she did. After that, we went to the art supplies store to get 2 canvases for some commissions I've picked up this week. The employees were very helpful after noticing what my trouble was. Mom and I were dog tired when we got home. Even so, I finished 2 paintings, and have started on Andreas' commission for Kelsey's room. Cant wait to see how it turns out, and if she likes it! I'll post them later today. Gotta get ready to go for my PICC line at St Joseph's.

PICC line scheduled

Amber from Dr. Kiely's office called with a date for the PICC line. Its to be Friday at 12:30pm. Not sure when, Saturday or Monday, they will start the 3rd round of IVIG. I will know tomorrow. Thursday is my Brain MRI. Today, was another huge balance issue day. I felt like I was drunk trying to walk around all day. The "extreme fatigue" hit me hard as well again today. I keep saying to myself... "just finish 1 painting".... usually its too much effort. Although, I am really close on one of them. Andrea came over to visit on Monday. Nancy got back from her trip ok, along with a tattoo. Rafael called tonight, and sounds super depressed. Thats hard for me to hear time after time. My feet and ankles are VERY swollen. I wonder when my lungs will start to fill up. Congestive heart failure around the bend? That would suck because of the panic and anxiety, but then again... a faster way out then previously thought out. Ebay and Etsy are sucking wind this week. I've really got to force myself to paint, whether I feel good or not. It's the only way I'll be able to pay my bills for now. Mom just felt my forehead, and i have a fever. I was wondering it was so freaking hot in the house. Maybe thats why I've been feeling so bad all day, too. I feel bad every day, so how am I supposed to notice?

“I start to feel like I can’t maintain the facade any longer, that I may just start to show through. And I wish I knew what was wrong. Maybe something about how stupid my whole life is. I don’t know. Why does the rest of the world put up with the hypocrisy, the need to put a happy face on sorrow, the need to keep on keeping on?… I don’t know the answer, I know only that I can’t. I don’t want any more vicissitudes, I don’t want any more of this try, try again stuff. I just want out. I’ve had it. I am so tired.”
-Elizabeth Wurtzel

more nerve attacks yesterday

Yesterday was the absolute pits. It didnt matter what position I was in, those damn nerve attacks were constant. Totally wiped me out. Falls # 15 and 16 to add to the list. Mom helped tremendously by massaging my arms and the back of my neck. The doctor at Emory said to send another "nerve message" higher than the pain on my spine, so my brain would focus on that instead of the nerve attack pain. It works after a few seconds or so. Brilliant idea! At 11:45p, after the 16th fall (I hurt my hand bamming into the baseboard), I got the bright idea of taking a whopping does of steroids, and lo and behold... today I can move around and NO nerve attacks thus far! God, what a relief. I feel so much better today, and I actually feel like doing SOMETHING... anything. Now that the downstairs A/C is humming along, we are human again. Its the little things in Life...

new Xmas art

My popup thingie is busted, so I'll just add this new art via the manual way. She's called, Sexy Santa Girl!

today

At 6am this morning, I got up to go the bathroom. When I was stumbling back, my eyes saw the spinning fan, and I pitched headfirst onto the carpet again. Fall #14. No injuries, as I'm learning not to break my fall so I wont break anything. The A/C is still out, but the man is coming tomorrow to install 2 new units upstairs and downstairs. How do you spell relief? Rafael FAXed my S/T dsiability form today (takes 5 days to process), and mailed all of my sold artwork out from ebay. Thank God for him. I wasnt sure how I was going to get the FAX inside the store, much less actually WALK inside the post office. Jodi turned me onto online USPS services, so I need to do that for next week. Its just too much for me to handle... simple little errands like that... and not fall flat on my face. Dr Kiely and Dr Knowlton both get back from vacation on Monday, so I'm hoping to get more IVIG scheduled then. Its been almost a month without that medicine, and I'm steadily declining. My ankles are very swollen. Its just a matter of time now. I really need to get my affairs in order before I may not be able to in the near future. I've tried twice to upload pictures through Blogger, but its not working for some reason. I have more new art, but you'll just have to catch it on ebay in my store for now. Computers!

ooops!

I just tried to make my way in the dark to get water just now, and I fell and hurt my right foot. #13. I couldnt find the dang light switch, especially with my head swimming around,trying to walk, and keep my balance all at the same time. I cant sleeep... its so dang hot in this house.

it's all relative

This morning I woke up too extreme problems with my balance again, as well steadily declining muscle strength in my legs. The good news is that the new medicine the doctor put me on made it so I did not have a nerve attack for the first time in a month! What a relief! They really wipe me out. The air conditioning is out right in the middle of this blazing Eastern seaboard heat wave, and the workmen cant replace the 2 units until next week. We are suffering! I was able to get enough energy to shower and drive over to John & Jodi's for another afternoon painting session. Its so lively and happy over there, and I had a ball painting and visiting. It made my day to be able to get out of the house for awhile. The kids are adorable, and J & J are always fun to be around. It was a little scary driving over there, as my eyes are still "wobbly in my head." I asked J & J if they noticed, and they couldnt tell. I can though, and thats the problem. Maybe an eye nerve is being affected? I have a Brain MRI scheduled for August 10th, so I will know more then. I stayed 4 hours, and I thought I had better leave before I got overly tired. I didnt realize how tired I was until I got home, and tried to walk inside. I had to call Mom from inside to help me.... otherwise my legs were going to give out. It's better now since I've been resting. No falls today, but the count sits at 12 so far since June. I finished a new piece of art while I was over there! Its already listed on ebay, and I'm headed over to Flickr in a bit to upload it there. I'm addicted to Flickr! I've met some really nice people, especially other artists, from all over the world and nation.

another bad day

I spent the day in bed as every time I stood up, I was dizzy and had no muscle strength in my legs. Mom brought food to my bed, and helped me to the bathroom until it eased off a bit this evening. She also got my medicine, so I am hoping not to have anymore nerve attacks tonight as last night. They were not as severe as what brought me to the hospital, but enough to put me to the floor each time. I need more IVIG. I dont know if my body is going to make it through this one...