Virtual Pity Parties

My last post ended up in one great big pity party - thrown just for me and by me. I've given myself permission to have virtual pity parties on my blog. I don't write here for the approval of anyone, it's just MY place. If some one reading my blog doesn't like it, they are free to NOT read my blog. I've found that virtual pity parties are so much better than real live ones because there is no "collateral damage". The people I love and that I am close to don't get hit with my outbursts, as well they shouldn't. I get to vent and whine and get it all out of my system and it helps me move on. I wish all my pity parties were virtual - that's a good goal, I think I'll aspire to it.

Holding Every Thought Captive

It's a verse I learned as a child and have 'always' known:

2 Corinthians 10:5
We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.

While I was swimming the other day, I was meditating and praying as I usually do during my swims, and this verse came to me as I was praying about an issue that's been bothering me a lot lately. It occured to me that everything that comes out of my mouth starts out as a thought. So I have started 'holding the thoughts captive', like holding them up to the light and looking really hard at them before I allow them to go from my brain and out my mouth. What HUGE improvement this has made. Many, many times, when I hold the thought up to the light I get the answer to not release the thought into words. In other words, I keep my mouth shut. Many other times, when I hold the thought up to the light, I am given a different way or even just a different tone to use when I verbalise the thought. Sometimes, I am given something totally different to say than the original thought.

I think this must be what my Dad has done all of his life. He is a man of few words, but the words he says are always meaningful and wise. I know that James is his favorite book, and it talks about taming the tongue, so maybe that is another place where he draws strength.

In any case, it's working for me and I am grateful.

A Flare

I've been feeling it coming on, joints swelling, chest hurting, cough, rattle, it always seems to happen when I go below 10 MG on the demon drug. I've tried every day to mentally battle it, to keep swimming, to tell myself I would level off, that it would be different this time.

It was not to be so. Yesterday Dr. Leeper listened to my chest and said if I weren't already on so much Remicade and Methotrexate, he would put me up to 60 mg of Prednisione. We compromised at 20. He couldn't believe I had been swimming that same day. How? he asked. How can I not? was my answer. I have a life to live, kids to raise, THINGS TO DO.

After Dr. Leeper, Amanda and I went to little 5 points. She really loves going down there, and it gives me joy to see that. We went in a shop where a bird had flown in, and the shop keeper was trying to shoo it out with a broom type contraption. She didn't have any luck at that while we were in there. We looked at vintage clothes, crystals, incense, trinkets and toys, and just plain wierd stuff. We ate lunch at a place where the front wall is a huge garage door (like at a mechanic). The door was wide open and a nice breeze came in. We were right on the street and we could people watch while we ate. It was nice. Then I could walk no longer, so I took up residence in the window of a bakery and sipped Lemonade while Amanda walked around. A guy with a teal painted skull walked by a few times. Some girls with about 80% of their bodies tattooed came by, and there was this one guy trying to sell everyone newspapers. If you wouldn't buy one, he became borderline violent, so we stayed as far away from thim as we could.

Next, we drove north to my next appointmnet. We were early, and there was a Great Clips across the street, so I decide to get a quick hair trim before my 6:00 appointment. That was mistake. I think the black guy cutting my hair had never cut a white girls' hair before. He took F-O-R-E-V-E-R. He started a 5:10 and finished at 6:18. At 6:00 I tried to get up from the chair and leave, but he woulndn't let me. I still have no idea what he was doing, but whatever it was, he did it ONE HAIR AT A TIME. My head weighs at least 1 extra poound because of all the goop he kept putting in there. And I have such a simple haircut! All he had to do was follow the cut, trim it up, blow dry it and be done. It was the strangest experience in a hair salon I've ever had, like some perverse twilight zone version of "Just a routine trip to the hair salon", with a hideous cackling and off-key music playing in the background.

Finally, I did make it to my next appointment and then back home. It was a long day and I was tired. My O2 tank ran out just as we got into the Alpharetta City Limits. Today was a setback medically. Not only does the DEMON DRUG interrupt my sleep cycle, but it impacts WHO I AM, HOW I ACT, and worst of all HOW I THINK. And then it takes SO LONG to wean back down again.

I struggled with the decision. When I was preparing my morning meds last night, I put the 20mg in. Then I went back and took them out. Then back in, then back out. Then when I was struggling to lift one of my feet off the floor with both hands to put on a sock, I succumbed. I put the 20 mg back in, and in it stayed.

I have become so swollen that I can barely walk, dress, move even. My weight is way up, I think because I'm so swollen. Of course it will go up again when I start taking more Predninsione. It's like a vicious circus ride that never stops, only winds tighter and tighter, with less options at every turn, fewer paths of escape.

And then there was THE DREAM. THE DREAM I had the night before going to see Dr. Leeper. It was the most horrifying dream of my life. I was visited by DEATH, taunted by DEATH, mocked by DEATH, until I finally woke up in a cold sweat and had to take a shower, change my clothes, and the sheets. It shook me to the core of my soul, making me fearful of sleep. But I did pray, and I was spared another visitation last night. Well, to be honest I didn't sleep at all last night, so it's kind of deceptive to say I was spared the visitation. The truth is, I didn't sleep at all last night, so upset about the FLARE, the Prednisone, and the visitation from DEATH.

I put my bathing suit on at 3:00 this morning, with every intention of driving to swim at 5:30. But when 5:30 came around, I realized I was way too unstable to drive, so I didn't go. Michael said he'll take me tonight and I'm going to go. It's what I HAVE to do, Its ALL I CAN do to fight back, my tiny window of defiance against this disease from Hell.

So I put my suit back on, feeling nauseus like I was about to throw up everything I've ever eaten. I asked Michael to take me to get a salad before swimming, thinking that I just needed a nice glass of Iced Tea and some rabbit food. WRONG. I just got sicker at the restaurant. So we came back home, my entire salad with us in a to-go box. So despite 2 attempts, I didn't make it to the pool today. It's like windows that keep slamming shut, and I hate it. I will try again in the morning.

A Matter of the Heart

Sometimes every word, every action, seems to come out wrong, or at the wrong time, or in the wrong tone, or maybe it's just received differently by the you than it was intended by me. The slightest flinch, cut of the eyes, smile on the lips, is somehow all twisted and perverted into a jagged edge that rips and tears at the fabric of our relationship.

Sometimes you love a person more than life itself, but being with them is like hearing fingernails on a blackboard, screeching and scraping and ripping your nails into dry dusty shards, finally leaving a chalky, scratched, and bloodstained board behind.

I feel your anger and contempt for me in every glance, I hear it in every word. I know I am detestible to you right now. I just don't know how it got to be that way.

Maybe its the phase of the moon, the phase of our lives, I just don't know. Maybe you just can't take the 'me' that I have become anymore, or the twists and turns that our lives have taken. It would be understandable, so much has been taken from you; so much asked of you. All I can say is that life isn't fair, and things are what they are. And I can say I'm truely sorry. For what I know I've done wrong and for the things I don't even know hurt you. My heart is pure for you even if my mind is sometimes cloudy, mixing up last week with last month, forgetting things that are important to you.

I can recall the easy going, comfortable place we used to share. When it didn't matter if we talked or not - silence was just as good as chatter. The secrets we shared, the times we laughed and did silly things just for the fun of it. When you trusted me and I saw love in your eyes.

What is the fermenting, boiling 'stuff' that is just beneath the surface all the time now, waiting to spurt out and plop all over both of us at the slightest disturbance? I hope and pray you can find a way to release this cancerous mass before it consumes the beauty that is inside you.

My love is too deep, too real, too strong to let go. I will ride it out. No matter what. Everything wavers except the heart - nothing else is true, and only death itself can quench it. If you can find a way to see into my heart, you'll know. You'll believe again. All the rest is just 'stuff'.

8 and counting

Dr. Butler lowered my Prednisone to 8 MG/daily on Thursday. It's been a tough go of it since then. Pain is up, Fatigue is up, taking more pain meds, and generally feeling bad. Today I didn't even get out of bed untl 4PM. The pain was so bad and I kept taking meds until I could finally stand to feel the air on my skin. Afater I finally got up, I had migraines and nausea for the rest of the day. So, I don't know about 8 MG, we may have pushed it too far for now. Might have to go back up to 9 or10 mg. I'm going to try my best to stick with this for at least 1 week before throwing in the towel. I had every intention of going swimming today too, but didn't make it. Today was my Methotrexate day too, and I took my injection late in the afternoon. So Sunday may be even more of a challenge than today. Oh well, going back to 8 or 10 mg for awhile won't be the end of the world. We can try to lower it again in a few months. Until then, I'm hanging in here.......

Necessary Change

Tuesday I did someting I've been needing to do for a long time. I went to a new Psychiatrist. There were many 'little things', and some not so little, that had been bothering me about my prior doc. 6 months ago, my therapist left his practice and went out on her own. I chose to stay with him for med. management, and went with my therapist for counseling. I knew even before she left his group that things weren't right there.

A few weeks ago I was visiting with my Father in Love, Bill, and he made and observation about me. He said I tend to stay in a bad situation too long, even after I know it's bad. He was right on, as usual. This is just one more example.

My new doc. is a woman, right here in Alpharetta, within my driving range. So I no longer have to arrange a ride downtown to see my Psychiatrist. That alone is a help to me and everyone who helps me out. We hit it off great. She is very easy to talk to and worked with my needs. She even spent 15 minutes over our alloted hour (sometihng my prior doc WOULD NEVER DO). Then she even asked if the fee structure was going to be a burden for my family. Now when have you heard of that? I was dumbstruck. Then, you won't believe this - she gave me her CELL PHONE number and said to call anytime.

When I would ask my prior doc. what a certain medicine did, or how it worked, he would always shrug off my questions with answers like 'it just does', or 'it works on some chemicals in your body'. When I asked her, she brought out a diagram and explained to me how my current meds are working, and how other medicines work differently.

All in all, I'm very happy to have finally made the change. The only downside is that I've been asleep since Tuesday (now it's Thursday), except for a few hours. The effort to go back to the beginning of 'all this' and 'tell my story' to her was emotionally very difficult. It wiped me out, put me to bed, boom. But I'm over it now, and awake, and here I sit blogging about it all. Today I'll call and cancel my upcoming appointment with 'HIM', and that will be that. Done.

A Great Place To Cry

I can't believe I've never thought of it before. Today at the pool I cried my eyes out and not a person noticed. I swam for 2 hours (rather than the 30 minutes I promised my doctor I would limit my swimming to) - crying the whole time. It's really great; water splashing up, mixing in with tears, lots of noise to mask the occasionial sob - all in all a really great approach to the whole thing. Sure beat laying in bed watching Humphrey Bogart (although he is my fav. old actor) movies and crying all day. In the process, I was actually DOING something. For at least those 2 hours, NO ONE can accuse me of NOT TRYING HARD ENOUGH. But I guess I could be accused of using it as a crutch.

Domino

The call came from my sister in-law in the Summer of 1993. A family was moving and couldn't take their cat. Were we interested in adopting a cat? You bet we were! I have been a cat lover all my life. Since moving from an apartment to a house in March, Amanda had been begging for a cat. We wasted no time driving to the family's home in Kennesaw to meet Domino. She was clean and well cared for, pretty with bright green eyes. True to her name, her coat was black and white. The famly had selected her from a litter of kittens at the Big Chicken in December 1990, so she was almost 3 years old. After loading her and all of her "things" into my car, it was off to pickup Amanda and present her with a BIG surprise!

Amanda was thrilled. She immediately took to Domino and we headed home. For the hour or so drive, Domino roamed around the car howling and meowing - she was a bit freaked out, as to be expected. At home, we kept Domino inside for about 3 weeks. This was to try to get her well accomodated and lessen the possibility that she would roam. Finally the day came for her to go outdoors. She loved it. She ran all around the yard, darting here and there. She kept circling farther and farther from the house, and eventually went out of sight. Amanda was beside herself with fear. Would Domino come back? Would she run away? Would she get hurt? Bedtime came and went, but no Domino. With great difficulty, I finally got Amanda to sleep with the promise that I would wake her up if Domino came home.

Around midnight we heard cats outside. Opening the front door, I saw 2 black and white cats on the front porch, facing each other, backs arched, both growling. The problem was, I couldn't tell which one was Domino! We picked them both up and brought them inside. In the light, we were able to tell them apart. We put the other cat back out and I ran upstairs to tell Amanda that Domino was home safe and sound. The smile on Amanda's face was radiant. I placed Domino on Amanda's bed and they went to sleep.

Amanda entered Kindergarten in the Fall. She was in Mrs. Harris' class, and one of the highlights of the year was pet day. Amanda wanted me to bring Domino. On the appointed day, I placed Domino in a cardboard box and we drove the 2 miles to school. Carrying Domino in that box was tricky. She definately didn't want to be in the box, and was expending all possible energy to escape. I made my way as quickly as I could to Amanda's classroom and let Domino escape from the box. Now she was faced with a room full of 5 year olds - she was truely freaked out! She ran up the bookshelves to the highest place in the room and sat there glaring down at us all. Mrs. Harris asked Amanda some questions about Domino and the children watched her for a few minutes, then it was time for us to leave. I managed to get Domino back in the box and practically ran to the car. She was clawing and biting and howling, trying to get out. I barely made it back to the car before the box split open. I got her back home and she settled down. That was the last time I took her in the car without a proper pet carrier.

One night I came home late from work, in the days when I still wore panty hose and pumps. As I got out of my car, I saw Domino in the shadows fighting with another cat. I grabbed a broom and tried to seperate the cats. They started running through the yard and woods, still fighting. I gave chase, all the while trying to seperate them with the broom. Finally the cats got enough of it all and parted company, each going their own way. Panting, with ruined panyhose and muddy pumps, I limped back to the house, dragging the broom behind. As I neared the front door I looked up and saw Domino - inside the house. There she sat on the windo sill just watching everything going on outside. It was then that it occured to me just how many black and white cats there are in the world. I had just gone through considerable effort and sweat chasing 2 black and white cats around in the dark, and neither one was mine!

The maddest I've ever seen Domino was the day of the strawberry bath. Will was around 3 years old and wanted a bubble bath. At that age, he called her "Minomino", and liked to eat and drink from her dises in the kitchen. Anyway, I prepared the bath with an extra dose of bubble bath. The bubbles mounded up a good 1-2 feet above the rim of the tub. Quick as a wink, Will grabbed Domino and tossed her into the frothy mix. Like a bullet, she flew back out and ran as far away as possible. Soaking wet, she hid behind the couch in the den. She was a sight, all wet and bubbly and really ticked off! I took a picture of her and will try to find it.

Another funny Domino story is when we could hear her but we couldn't find her. It was really odd, and sounded like her meows were coming from the vents in the house. We had recently had some construction work done, and in the process the vent covers were removed for a few days. I was convinced that she had found an open vent and crawled into the duct work. It sounded like she was in the duct work under the floor in my bathroom. So Michael took a saw and cut through the floor and duct work to rescue her. After cutting a gaping hole in the floor we were disappointed when we found she was not in there. Although both Amanda and Michael had already checked the crawl space, I decided to go check it one more time. I opened the door and there she was. Domino just sat there and stared at me and let out a tiny little "meow". Then she calmly walked out of the crawl space as if nothing had happened.

At around 12 years old, Domino started having arthritic problems. It got harder for her to clean herself, and Amanda started giving her special medicine every day. We started bathing her in the bathtub since she couldn't clean herself very well. We had to hold her in the water - it took 2 of us to bathe her. After her bath, Amanda would wrap her in a towel and blow dry her hair. Domino was slowing down.

Last night, Amanda came in from the garage with tears in her eyes. She said something was wrong with Domino. I asked what was wrong and she said "I think she's dying". We put Domino on a towel and into a plastic crate and broght her in the house. She was very limp and unresponsive. I put the crate on Amanda's bed and left the two of them to be alone for awhile. Later, Amanda asked me if I would be with Domino, she just couldn't handle it. I put Domino next to me on my bed and slept beside her, my hand always touching her. I kept waking up and fearing the worst, only to see Domino still breathing, lying next to me.

At around 2:30 this morning I woke up and checked on Domino. She had pulled her little body over closer to me so that her head was on my pillow. She wasn't breathing anymore. The end had come. Her little lifeless body was cold.

Farewell Domino, we miss you. We are grateful for the many years of friendship and fun you gave our family. I know Amanda will have other pets, but there will never be one like Domino. From Kindergarten through High School graduation they were best buds.

Prednisone, Horns, and Popping Discs

Today was my monthly checkup with Dr. Butler. The GREAT news is that I'm going down again on my Prednisone from 12.5 mg to 10 mg starting tomorrow. The other GREAT news is that she is prescribing a brand new treatment for me to try that DOES NOT INVOLVE DRUGS!! It's something that has just recently been approved by the FDA; some sort of gadget that goes on your knees and hands while you sleep and sends electricity into the joints. Dr. Butler said it sounds wacky, but she knows the researchers that developed it and has high regard for them. During the trials, they were able to demonstrate through verifiable tests that this treatment actually reduces the inflammatory tissue in the joints by significant amounts. I'm eager to get started. I'll have to be fitted for the 'gadgets', and I'm sure Dr. Butler will have to write a justification to get my insurance company to fork over the $$ for it. I just wish I could remember what it's called!

Another good peice of news is that the skin on my back has finally healed, so I can go back to the pool. Since the pool is the only type of exercise I'm allowed to do, this really means a lot to me. I've gained so much weight on this nasty Prednisone over the last 3 years that I desperately want to lose. Even if I can only last 20 minutes in the pool, it's at least a MENTAL victory for me.

My back is another story. My L5/S1 vertabrae are "bone on bone", according to my doc. I am in excruciating pain most of the time, even though I take 60 mg of oxycontin every day and 6 Vicoden for breakthrough. It was so bad yesterday that I cried during my entire appointment with Dr. Becker. The doc says I really need surgery, but because of my health conditions I am NOT a good candidate for it. We are doing a series of 3 epidurals and praying for a good outcome. I've had 2 buldging discs for nearly 20 years now, and have had several rounds of epidurals that have been succesful. The difference now is I'm older, I have Osteoporosis (from the Prednisone), I'm Diabetic (from the Prednisone), and WAAAAAY overweight (from the Prednisone), plus the disc is in really bad shape. Honestly, I don't think I can face anymore surgery, I am afraid I couldn't make it through. So this is something I'm praying about a lot these days. Every now and then I get a few minutes when the pain dies down to a dull roar, like right now, and I can write to my blog or something sedentary. I'm pretty useless around the house; I can't stand up long enough to load the dishwasher, much less prepare a meal! We're all trying to pitch in and make the best of it, but after weeks on end staring at a dirty house and being unable to reach, bend, scrub, or anything, it gets pretty depressing.

I also saw my Opthomologist today. I have to see him every 6 months because of my Sarcoidosis and Diabetes. Everything looked pretty good, except my dry eyes are getting worse. I promised to start using the artificial tears like I'm supposed to do. He said if it doesn't improve, they can put little plugs in my tear ducts to help my eyes retain moisture. Now thats something I've never heard of....I learn something new every day!

Oh and one more update from last week - the Dermotologist says the lump on my forhead is a "bony cyst", and is harmless, and basically I just have to live with it. Ok by me - at least it's painless. I think all these weird bumps on my head and shins are from the Sarcoidosis, personally, but heck I don't have the Medical Degree, I'm just a humble Mathematician. On the other hand, maybe Mom is right and I'm sprouting "Prednisone Horns". It might actually be good if Prednisone gave you horns because they might warn the people around you about how nasty and volitile you've become on the inside from that poison.
So let's see, that updates the Rheumitoid Arthritis, Degenerative Disc, and Eyes and strange growing bumps. I won't see my Pulmonologist again until next month to get an update on how my lungs are doing. At my last visit he told me my disease (Sarcoidosis) had progressed to Stage 3 (ugh). The latest statistic I've seen on Sarcoid is that 5% of people who have it die from it. It's a far cry from what they told me in the beginning - and it's appalling how uneducated the medical profession is on the insidious nature of Sarcoidosis when it is systemic.

On the caution side, I fear I may have another ear infection. I'll be calling Dr. Levin tomorrow to take a look at it. If I do have one, it puts next weeks chemotherapy (Remicade) at risk, and I don't want that!

Like Gilda Radner said, "It's always something"..... In my case it's always something, if its not a disc popping out, its horns growing from your forehead.... (If you watched Saturday Night Live in the 70's you'll get that).

Well thats about all I can stand, so I'm off to take some pain pills and try to get some sleep. ZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzz.

Need to run away

I think it's time. I need to run away for a few days. Just me. No phone. No one else. I'll have to lug that dang oxygen machine with me, but I think I can manage it. I'm planning my escape. bye bye.

You're Fired

Today I fired my Pulmonologist. I switched to a new one, a doctor that is more available to attend to patient care. She was my doctor while I was hospitalized in May for Pneumonia and I really liked her. So even though my joints, edema, breathing, and everything else really stinks today, I feel a little better to have taken care of this. So There.

A Place to Think

I went here once.
All alone I hiked about an hour into the forest.
Then found this lovely place and rested.
The water was ice cold on that hot Summer day.
And I want to go back.