Road to Recovery (Ashley's Story)

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Joined: 01/03/04
Posts: 37
Road to Recovery (Ashley's Story)

I'm starting out this journal on my daughter's progress with the post I made about her accident & condition on the Anything Topic Board. It explains the beginning to those who don't know her story.

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Aug. 9, 2006

Forgive me if I'm rambling, VERY bad day for us:

My daughter Ashley was involved in a horrible car wreck today at 11:29 AM. It was her first day of school & just 3 days after her sweet sixteen birthday. She was riding home with her dear friend, Kelly, when someone in a black mustang came flying off of a side street into oncoming traffic. They swerved wildly, blocking both lanes & slammed on their brakes. Kelly had just passed another motorist when the car appeared in front of her. She tried to stop & swerve but, was boxed in. She hit the car & then was hit from behind. The impact was so severe that it sent them across the road, over the curb, then into a telephone pole & they were bounced back into oncoming traffic where they were hit again.

I received a call from Paramedics from the scene asking me to meet them at the hospital (parent's worst nightmare). When I got there Ashley was still on the backboard & in a neck brace. Blood was everywhere & it took all I had not to pass out. She has a concussion, several serious cuts that required stitches & also had glass embedded in her face. Her leg was really swollen & they think her ankle may be broken. She has bruising & scrapes all over her body, a very prominent one where the seat belt caught her. Her back is also seriously injured but, we are not sure how much damage was done. The X-rays don't show any fractures in her spine but, she is in too much pain to stand or walk. She has feeling in her feet & legs but, said her upper thighs & butt is very numb. They gave her Morphine & released her a few hours ago, against our wishes. (Don't get me started on how crappy this hospital is!)

Kelly suffered a broken nose, a concussion, scrapes, bruising & a cut on the cheek but, will be fine. They released her several hours before Ashley. I felt so bad for her because she was devastated over Ashley's injuries and apologized to me while crying hysterically. I held her hand, told her that I don't blame her in any way & it wasn't her fault. There was absolutely no drinking or drugs involved. She did everything she could to prevent it.

The police told me they are VERY lucky to be alive & seat belts undoubtedly saved their lives. The telephone pole was snapped in two & Kelly's car was totaled.

I don't even think it has hit me yet. I feel like I'm in shock. It's so hard for me to think about how close we came to losing her, losing them both.

If Ashley gets any worse or still can't move by tomorrow then I am taking her to Nashville to be treated. She is resting right now but, she has made no improvements since the accident. We are all very worried about her back & everyone was shocked they released her. If they missed anything I will sue their asses off!!!!!

Please send prayers, positive thoughts/vibes, et al. our way. I will be sure to keep everyone updated.

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I'm exhausted after 48 hours of no sleep so, bare with me & sorry for the typos.

I stayed up all night with her & she was in an incredible amount of pain that was not controlled by the meds. . 24 hours went by since the accident & she couldn't pee, not even in a bed pan. She also couldn't sit, stand or walk. Moving her just a few inches in her bed made her cry out, hyperventalate & sweat profusely. We tried everything we could think of to get her some relief but, nothing was working. I made the decison to call for an ambulance & demand to be transported to Vanderbilt in Nashville. The paramedics refused, stating that by law they must take her to the nearest hospital, Gateway (to hell) Medical Center...Yes, the hospital that 'treated' & relased her the night prior.

Once there, I was asked why I brought her back, insinuating that I was a nutjob & Ashley was just putting on an act to get attention. I explained the situation in detail & again demanded a transfer. He refused as well, stating he would ASSess the situation & then decide. He informed us that I could take her myself, knowing full well Ashley could not ride in the car. I then told him I wanted an MRI done & he said "They didn't do MRI's for emergency medicine" and that her Ped could order one if they wanted it done tomorrow"

Needless to say I was livid at this point (well, I was livid well before this point). I had to fight with them to get someone to put a cath in Ashley so she could at least pee. After waiting two hours, they finally sent someone in. Poor Ashley's bladder was so full she was about to rupture. She filled the bag (large one) in under a minute.

After I went back & forth with them for some time, the ER doc FINALLY agreed to do an MRI. An hour later he comes over to say, I think we see 'something wrong' but, we want to run a CT scan on her too. 30 more minutes pass then three nurses & two doctors come in the room & closed the curtain around us. The first thing they did was start apologizing. My heart sank as they told me Ashley's lower spine was broke in two places. They then asked me where I wanted her sent & I told them Vanderbuilt, that's where I wanted her to be treated all along. DH saw that I was about to kick some incompetent hiney & stepped in to pull me back.

We are now at Vanderbilt & they have been wonderful to us. They admitted her to the Critical Care Unit. Several specialists & doctors have been in to see her already. Tests have been run & more are ordered. They told me that she has SEVERAL spine fractures & not just two breaks. They are trying to determine if she needs surgery to stabalize her back.

She has feeling in her feet & legs. Her upper thighs, butt & lower abdomen are still numb. She still has the cath in & is unable to pee without it. They believe the nerves are in tact but, are being pinched off from swelling. She also has other injuries which I will update more on later. They do think she will be able to walk again but, it will be a long road to recovery for her with physical therapy.

I haven't had a chance to read all the responces yet but, I'm working on it. They have a computer in Ashley's room & I will be able to give updates now. Thank you all for the prayers, well wishes & support, they mean SO MUCH to us.

If anyone wishes to send well wishes/encouragement/cards directly to Ashley here, please PM & I will be happy to give out the information needed.
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Ashley is doing a bit better today. They took her cath out . She was able to pee in a bed pan but, she 's still numb & can't feel if her bladder is emptying all the way though. She is unable to sit up because of the intense pain. Physical therapy is coming in later this afternoon to work with her. They are setting up a trapeze so she can use it to pull herself up & take the pressure off her lower back while attempting to do it.

They don't think she will need surgery to stabalize her spine fractures because they are low on her back (between & just above the hips) but, it's a wait & see situation. Her ankle may need to be casted & they did another Xray on it this morning. It takes a few day to get a good picture of the calsification. They also needed to wait for some of the swelling to subside. They are hoping to relase her Monday but, again, it depends on how well she does. She will need in home nursing care & a tutor as well.

Thanks so much for all the encouragement, love & support. You guys are the best!
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Aug. 14

Ashley is still having problem's urinating. She goes pee in a bed pan but, can't evacuate her bladder even half way. She must be cathaterized every time after she goes to get the residual. They have taught me how to do it because she still needs to be cath'd after they release her.

She finally had a bowel movement yesterday & it has made her feel a little better. She strained for several hours & it exhausted her. She ended up with an enema because she is having too many problems. She's also still having problems with nausea but, I feel that's mainly to do with the pain medications. She now gets anti-nausea meds with it to help.

The newest Xrays of her ankle don't show a break in the bone. They think she has tendon and/or ligament damage but, are not sure how much yet. They have fitted her with a special boot to use during physical therapy, when she is finally able to stand.

Physical therapy is moving along. It's very exhuasting for her but, she gives her all. She is able to sit up half way with the aid of the trapeze & can hold it for about 7 minutes. She progresses a few inches each day & even though it doesn't seem like much, it's like climbing Mount Everest to her. I keeping telling her we are getting there, we just needs to take baby steps. She was very athletic until the accident happened. This whole process is very frustrating & humiliating for her but, she has handled it with grace. I doubt I could have done so well at that age.

As if her struggles are not enough, the stress has sent me into a Lupus flare. I'm hurting all over, running a fever, weak & exhausted. I am trying my hardest to stay strong for her though & will stay here with her, even if they have to put me in a bed right beside her. I have been here 100% of the time, since day one, & I refuse to leave. This is our home until she is better & I will leave when she can go too & not a minute sooner.

I don't know when they will release her at this point. She may be going to an inpatient rehabilitation center after here. There was more damage done than they initially thought & it will take longer to heal. They are not sure how much function she will regain but, her prognosis is still good. We are just taking it one day at a time, one problem at a time. I'm told she will most likely suffer from back problems the rest of her life though, due to the severity & location of the breaks.

I will be be moving this to the journal section for further updates because this will be an ongoing thing. I will post a link when I have it started so anyone wishing to follow her progress & journey to healing, can.

I sure do appreciate all the support & prayers. It has helped us all out, lifting our spirits, reminding her that she has many people that care & are pulling for her. Thank you.

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A true miracle happened today. I went to get a prescription from the hospital Pharmacy & was only gone from her side for a short time. Her Physical therapist was working with her. I opened the door to her room & I was astonished at what I saw. She was standing up & taking small steps with a walker!!!!!!!!!!!!!!!!!!

We were only hoping she would be able to sit completely upright today but, she exceeded ALL expectations. It was a short trip that exhausted her for the rest of the day but, it was the best thing I have ever seen in my life! There's just not words to describe how good it felt to see her proudly standing there, displaying a smile. It was the first time she had happiness on her face since the accident.

The nurses were quick to remind though that this is the first step of many she will have to take. She will continue to have setbacks, as the nerves begin to refire. It will be very rough, LONG road for her & there are many things she will have to conquer but, she took the first steps. We have so much hope though & it was a relief to see a glimpse of her beautiful smile once again.

And even though she still continues to have bladder & bowel complications, nothing, I mean nothing could ruin the triumph of today.

Joined: 01/03/04
Posts: 37

August 17

She was released from the hospital & we are both so happy to be home. A friend came to pick us up in her van because we have so much extra stuff needed for her care that wouldn't fit into our car (A bedside commode, wheelchair & walker, among many other things).

She had a lot of anxiety about leaving & the car ride home. She smiled ear to ear though, upon seeing the army of people there to greet her. I really don't know what we would have done without all the wonderful people who reached out to us & helped. We feel very blessed for having such caring friends.

Before leaving the hospital we had a long talk with her Urologist. The news wasn't as good as we hoped. They expected to see more improvement in her bladder function at the one week mark. It is very uncertain how much of it she will regain now. I have to catheterize her every time she goes pee, then measure the amount she can void versus the amount she retains. We get more with the cath' than she can void at this point, with no improvement in the last 5 days. They still believe this will improve over time but, there is also a chance she will have to do this the rest of her life. Only time will tell.

Ashley wasn't prepared to hear what the Urologist had to say & began to cry. I wish she wouldn't have said anything because I don't want Ashley to give up hope. I have to believe she will get better & she needs to believe it as well. I know her doctor was just trying to prepare us for the worst possible outcome but, hope is what keeps her going. We can jump off that bridge if/when we get to it.

She is walking a bit better. She can go (very) short distances with her walker and goes a little farther each day. Her ankle is not helping matters though & it makes balancing a challenge. It's still really swollen & painful. I just hope it will heal without surgery. The bones in her back are still expected to heal without surgery as well. She has so much numbness in the pelvic region though and, like her incontinence problems, only time will tell. There is a good chance she will suffer long term back problems & may never be able to do all the things she once did. Her young age is a plus though & improve her chances for a better outcome.

The nurses at Vanderbilt spent the week training me for in home care. I was taught all the physical therapy exercises she needs to do over the next 2 weeks. They will revaluate her at that time & see if more is needed. If it is, she will need to go for physical therapy in Nashville. It isn't Ashley's favorite thing to do, understandably, because of the pain & exhaustion involved. She is a tough young woman though & gives it her all.

I also had to learn all the catheterization ins & outs (no pun intended). I shocked the nurses by getting it right on the first try. Must have been a lucky first try because I missed the second time. Now I do it like an old pro but, it's something I never wanted to know about. We all do what we have to for our children.

Her care is very time consuming with all the stuff she needs help with but, I enjoy spending the time with her. It has made us closer than we ever were. She sees that I'm more than her Mom now; I have become someone she can lean, cry & count on. I see it as another blessing that has come out of this. We cannot always grasp the reason why things happen but, I know they do for a reason. It has made us all stronger & closer. I have learned to stop asking why & concentrate on the good that comes from it. It's very hard some days though to not be consumed with anger & grief. Only 10 days ago she was a very bubbly, athletic teenager & now she struggles with simple tasks. It has robbed her of happiness for the time being. She trained very hard for band/flags & now will not be able to participate this year. Her positive attitude & courage inspires us all though. She reminds us that no matter what, we will get through it.

The phone calls from the various car insurance companies involved in the accident have started. We got two today, one hinted at an offer but, my DH hung up on them Lol . They tried to get information on Ashley's condition & even tried to get our car insurance information. What our insurance has to do with any of this is beyond me. She has never been behind the wheel of a car, wasn't driving the day of the accident & doesn't have a learners permit, little alone a driver's license. It was ridiculous for them to even ask & needless to say, we didn't tell them a damn thing. We decided it was time to get a lawyer & contacted one today. They REALLY want to take the case & are coming to our house tomorrow. He's a very successful, high profile lawyer that only deals with automobile accidents & related medical malpractice. He charges more but, will be well worth justice being served.

Right now, we are just trying to get into a routine that works. Her homebound schooling will start soon. We have much missed rest to catch up on too. How anyone ever gets better with all the doctors & nurses coming in every couple of hours, around the clock, is a miracle! I swear lack of rest is what kills people. I was trying to function of a few hours sleep a night & it wasn't going too well Lol .

We are just so happy to be home.

Joined: 01/03/04
Posts: 37

Aug 18

It has been very hectic. We are just trying to figure out a schedule that works for us all. Caring for Ashley properly is so important & is top priority. I guess though, that leaves everyone else to feel neglected by Mom. I'm trying to be everything to everyone & I am stretched very thin right now. I know things will calm down later but, for now, it's a mad house here.

The phone rings nonstop. Well intentioned friends stop by to see her & insurance companies making offers is making me nuts. How can you put a price on what she has been through & will continue to suffer with the rest of her life? She is priceless to me & no amount will ever change what happened. Still, we will need the money for her ongoing care. There is just so much medical insurance does not cover. There is also the long term care & quality of life issues at stake. She may need to be cath'd for the rest of her life. Her nerves may never heal completely & thus she may never regain normal mobility. Chronic, life long pain is a real concern as well.

I went to pick up her medical records to make sure they were not 'accidentally lost.' I was absolutely floored when I read them. The day of her accident the X-ray report reads that something abnormal was seen but, they were unable to determine the exact cause. The Radiologist recommended a CT & MRI. As everyone already knows, the attending physician ignored the recommendations. He lied & told me everything was perfectly normal, nothing to worry about, she would be fine. They FORCED her to stand up which is a BIG no no & undoubtedly caused more harm. I'm horribly sickened by what they put her through. I can't even find the words inside of me to describe how disturbing it is. How many other innocent people have they done this to?

We attained a lawyer today too. They came over at 2:30 to speak with us about Ashley's case. We were very impressed & relieved that they will be handling it from here on out. They feel we have a rock solid case for injury claims & malpractice based on the witness accounts, police & medical records.

It's been another rough day for her. We thought we saw a glimmer of hope earlier when we cath'd a very small amount first thing this morning. Turned out the cath must have been clogged with the medical jelly used to insert it. The second time around we got a large amount though. She has also had diarrhea almost daily since the accident. The Sacral fractures & swelling put pressure on the nerves that control her bowels too. As with everything else, only time will tell. We are just hoping & praying for the best.

I already miss all the wonderful families we got to know at the hospital. We shared daily the struggles facing our children & our worries about their recovery. We laughed, cried & prayed together. I feel honored to have shared this all with them. I did get email addys to keep in touch & can't wait for updates from them.

While at the hospital we got to meet Billy Ray Cyrus. He's an extremely nice man who cares very deeply for the sick children. We were disappointed though that we didn't get to meet his daughter but, she away filming in San Francisco. We love her Nickelodeon show, Hanna Montana. Here is the picture of him & Ashley:

Joined: 01/03/04
Posts: 37

****WARNING**** Graphic pictures

Here is the pictures that Kelli took of her car. They are not very good but, it's all we have for the time being.

Here is some pictures of Ashley after the accident:

She still refuses to look at herself in a mirror despite us constantly reassuring her it isn't that bad.

Here is pictures of the accident scene & telephone pole they hit:

Joined: 01/03/04
Posts: 37

I Went shopping today & bought a bunch of stuff to help make things more organized & easier around here. A room that was once cluttered with teenager stuff is now full of medical equipment & supplies. It serves as a constant reminder of how much our life has changed in an instant. The little things that we used to take for granted don't go unnoticed now. We appreciate it all & find joy in small accomplishments.

Flowers, gifts, cards & messages of support keep pouring in & it really does lift Ashley's spirits. She sees how much she is loved & cared about. She pulls strength & courage from it for the many tough days that lie ahead. Thank you to all who have given this to her.

I still feel like I'm in a daze & that it hasn't truly hit me yet. I have only cried a few times. The adrenaline seems to keep me going but, sooner or later I will hit the wall. I can only concentrate on making sure Ashley gets the best care possible. My whole day is planned around it & I have trouble leaving her for short periods of time to do the shopping. I guess that's how the fear manifests itself inside of me.

We are the end of another day & I'm, again, just so thankful she is here.

Joined: 01/03/04
Posts: 37

We were finally able to get her in the shower today. She was sick & tired of sponge baths but, who could blame her. We don't have a shower chair yet but, a lawn chair worked just as well. Necessity is the mother of all invention I guess.

I'm getting a lot of attitude from my oldest daughter Holly. I'm not sure what exactly it stems from though. Perhaps she is having a hard time dealing with what happened to her sister. Maybe she is jealous of the attention being heaped on Ashley. It also could be all the stress around here or maybe all of the above. Any time I mention the possible outcomes for Ashley, she gets mad. It's like she can't accept that this will last longer than another week. I'm trying my hardest to prepare the family, as a whole, for what MAY come but, no one wants to accept the possibility. The only thing denial does is make things harder in the future & will ultimately make it tougher on Ashley. She has a hard enough time dealing with the here & now. She doesn't need everyone being all upset if the news isn't good when she has her next appointment. I do understand that we all need to hold onto hope but, we must accept the reality of her situation as well.

I have been doing a lot of research on Ashley's condition. There is something that her doctors have not addressed that worries me a great deal. Along with urinary & bowel complications, sexual dysfunction goes hand in hand with this type of injury as well. She is young & not sexually active but, there will be a time in her life when this is going to be very important to her. I want that part of life to be fulfilling without such horrible complications. My mother, on the other hand, thinks it's really dumb for me to worry about that. She came from a time when women were not supposed to enjoy sex, it was something they did for their husbands, an obligation. She can't grasp that it should be a normal part of a healthy relationship between two people, little alone get joy & pleasure from it. It's like talking to a brick wall.

There just doesn't seem to be enough hours in the day to get things done. Holly just got a job at Pizza Hut. Between work & school she is never home. When she is, all I get is push back & refusal to help. Eric has returned back to work & is doing overtime to catch up on all the missed days. Isaak has some viral thing that has given him explosive diarrhea. He is miserable & needy. Ethan is taking advantage of the situation & gets into everything, only to be joined by his older brother. Adam is able to help some but, often makes more work for me instead. I would find a corner to curl up in & cry but, I don't have enough time.

The gang did let me sleep in this morning but, that only caused me to get up in a panic realizing Ashley hadn't been cath'd yet. I had to remind them that no matter how much I need the sleep, Ashley's care comes before mine. I know they meant well but, this is so important. I will be setting an alarm from here on out.

I'm hoping things go smoother tomorrow.

Joined: 01/03/04
Posts: 37

Ashley has an appointment tomorrow with the doctor in charge of her case at Vanderbilt. She's having a horrible time with her bowels. She did have diarrhea & almost couldn't make it to the toilet in time, even though it's right beside her bed. The last two days she hasn't gone at all & we are very concerned about impaction troubles. She also complains about increasing weakness in her lower legs & is refusing to get up other than using the toilet. It has me so worried. I just don't know what else to do.

I've been reading as much as I can about her condition. After reading her medical records, I found out the saddle paralysis she has is called Cauda Equina Syndrome. Cauda Equina means horse's tail in Latin, pertaining to the many thin nerve strands that branch off at the sacrum & down the legs. When these become pinched it causes a numbness in the area where a saddle would touch & can also effect lower extremities. Every single article I've read said that it was considered a medical emergency & surgery was needed to fix it ASAP. Her doctors have me confused though. They chose a more conservative treatment of rest. The articles were not just from WebMD or other popular medical websites but, also from the Journal of Orthopedics & Orthopedic Trauma Association. Not ONE site recommended conservative treatment. It's really making me worry & wonder why it is OK in Ashley's case. I'm going to confront them tomorrow & get answers.

:sad11:

Joined: 01/03/04
Posts: 37

Ashley's appointment went well today. We were the last people seen & they spent extra time with us, beyond closing. There was blood in her stool this morning & it's causing some concern over an additional bowel injury that was not previously found. It could, however, be from the amount of straining she must do to go. Even urinating is a struggle for her. Her bladder & bowel don't really get the signal sent from the brain so, it requires time, patience & lots of trying.

They did additional X-rays on her back & pelvis but, they are not satisfied with the results. Her Doc has decided to do another high resolution CAT scan & considering another MRI, depending on the results. Since it was after hours, they will be calling back with that appointment. The concern now is that she has a blood clot putting additional pressure on the spinal column. If that's the case then she will need to be treatment to resolve it. He said surgery is not generally used to treat it though but, other factors can come into play & he will know more when the additional scans are done.

He took us into his office & we were finally able to see the X-rays, CT & MRI results from the day after the accident happened. It makes me cringe to see how much damage was done. One side of the sacrum has a complete fracture & is displaced, making it easy to spot. On the other side of the sacrum she has an incomplete fracture. It's the only part still attached to the pelvis, is the only thing holding it into place & preventing the middle section (containing her spinal column) from free floating.

He also explained in detail why decompression surgery was not done. By the time they saw Ashley, the part of her nerves being pinched off had resolved but, not before damage was done. How much damage is unclear. The window of opportunity for treatment & reducing further damage was missed because Gateway dropped the ball. Proper treatment in the first 24 hours was critical. They made her stand up which increased pressure & hence more damage was done. Had they been competent & administered care (immobilization & Steroids) in a timely manner, the after effects would have been reduced. He said it could take six weeks, six months or six years for the nerve damage to resolve. If she's lucky it will heal but, there is still a good chance she will never fully recover.

After arriving back home, I crashed hard & didn't wake up until Midnight. It was just in time for her next cath. Things have caught up with me now. Sleep is my best friend & worst enemy. Despite the fact that it is desperately needed, it interferes with my ability to do the many things needed around here to keep things running smoothly. Aunt Flo is also hampering things quite a bit as well. She was 20 days late & because of this it's been extremely rough. I'm paying the late fees with interest. With all the hormones raging in my system, the tears flow freely now. But, it's something that I have need to do for two weeks now. Leave it to Aunt Flo to get the job done.

Ashley handles this whole thing like a trouper. She seemed in better spirits today & even joked with the nurses. She is one tough cookie & we are all so proud of the grace, courage & strength she continues to show. She accepts the situation & works hard to move forward. I don't know where she pulls it all from but, so happy she has this inside to get her through. I still worry that she is putting on a brave face for us. I want her to let out her anger & fears, not hold it inside. I've tried talking to her about it but, she is stoic. I will continue, though, to remind her that we are here if she needs to let it out. She must be able to heal emotionally too, not just physically. Her recovery as a whole is so important to us all.

Joined: 01/03/04
Posts: 37

Ashley started Homebound today. Her teacher is very nice. She already has a ton of work to catch up on but, I think she will do good with it. I know she would much rather be going to school instead, with all of her friends.

Thank goodness Ashley & I share the same sense of humor. We can find something funny in just about everything we do. While at the Doctor's Tuesday they wanted a stool sample. Well, of course she didn't have to go at the time & to save us another long trip down there, they decided to use a swab to get it. They also needed a urine sample so, off to the handicapped bathroom we went. Ashley said she preferred to try it herself & the nurse waited outside the bathroom to get the samples. The conversation between us goes as follows:

Ashley: "Ouch!" "My butt is numb & I keep sticking the Q-tip in the wrong place!" "Oh wait, I think I got it!" (She did get it & held up the Q-tip to show me) "Here Mom, hold this....."

Me: "I'm not holding your poo swab (while cracking up)...I'll get the nurse..."

Nurse: Comes in, grabs the swab from Ashley & realizes she only has two hands & can't open the vile to put the poo swab in. She looks at me and said: "Here, Hold this!" With a defeated look on my face, I hold the poo swab.

Ashley, of course, is cracking up by this point & almost falls off the toilet laughing so hard. She tells the nurse she tried to get me to hold it but, I refused. The nurse tells her "You didn't say it right, it's all in the way you say it." "Use more authority next time." Lol

I sure hope she doesn't need to have a colonoscopy. They suck big time! The gallon of "Go Lightly" they give you to drink, for cleaning you out, is false advertising. By NO means do you "Go Lightly"! It's more like someone stuck a fire hose in your mouth & there is a direct line to your ***hole! Your arse become so sore even cotton balls feel like sandpaper! I mean who names this stuff?!?!?!? Whoever it was needs to be fired! I had to do the test one time & I will NEVER do it again. I don't care if I s*** out my colon into the toilet! Blah!
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Ashley had much less urine today during catheterization. We are hoping this is a steady downward trend that continues. We have to be cautiously optimistic though because it may not last. She also had her first normal bowel movement today which was a relief (literally for her!). Hopefully she will continue moving in the right direction (pun intended). I know how badly she wants her life back & she is working so hard for it.

Holly seems to be in a better mood the last couple of days. I think her biggest problem is trying to adjust to working & going to school. The accident & upheaval that followed made things tough on everyone. Very rotten time to start a new job. She enjoys working there though & it gives her confidence. I think it's just what she needed to keep her mind off of things.

I've gotten into a schedule now & things are running a little smoother. I felt like I was going to collapse a few days ago. The walls were closing in on me & I was having a very hard time coping. I didn't show it in front of Ashley but, I really felt like I was losing it. I know my own serious health issues with SLE are not helping matters any. I seem to have this flare under control though & hoping hard it's not an illusion. Often times it turns the tables on me to show me who is in control & who is along for the ride.

Since Ethan is finally going to Kindergarten full time now, that allows me more time to rest. There never would have been a good time for the accident to happen but, things are harder because it took place at the very beginning of the school year. We have a hard enough time adjusting with 5 kids & 5 different schedules, little alone adding to it. Rest, though, had made all the difference in the world to me mentally & physically. I just can't get by without a large amount of it. I really need to accept that & stop fighting it because, in the end, it will always win!

Happiness rules today, I see a glimpse of our former life in the distance. Funny thing is, with my illness, I never thought it was all that great. Ha! Man, was I wrong. Never EVER take your children's good health for granted!

I know eventually Ashley will come here & read this so, this is for her:

I want you to know that I love you very much, baby. I am very proud of how well you have handled yourself through it all. I believe in you & your ability to overcome it, despite the incredible odds against you. I know, no matter what, you will be better than you ever were before. With all the beauty, strength & courage you have, there is nothing you won't be able to achieve in this life. Keep your dreams & hold them dear to your heart. Someday, you will live them.

Joined: 01/03/04
Posts: 37

Hope for a quicker recovery was dashed by a bout of diarrhea later that same night. I believe her intermittent progress is from the nerves trying to refire. Just when we think we see progress, she reverts right back a few hours later. I'm almost afraid to post any progress now because I feel it might jinx us. I know it's silly superstitious stuff but, it still sticks in my mind.

We are at the mercy of time. It's our best friend & worst enemy. It ticks by with no regard for the people it affects. She watches like a caged bird as friends go on with school & other activities. She is trapped inside a body that is broken & frail. I know it won't be this way forever but, to her, it must seems as an eternity has already passed. I stay by her side & only leave to make short trips for groceries, medications & medical supplies. I even limit my time online to spend it with her. How can I enjoy anything when she enjoys nothing?

I know this is all wearing on her & I try to do whatever I can to bring a smile to her face. I bought the movie "Silent Hill" for her. We saw it at the movie theater & I know how badly she wanted to see it again. I also moved a VCR & the Playstation 2 into her room to help with the grating boredom. She still doesn't move around much other than short walks. The pain & weakness chase her back to bed. I worry each day she lays there is eating away at her, not only mentally but, physically & more time is being added to her recovery. I want to push her to do more but, at the same time I'm afraid it will do more harm than good. I still encourage her but, she just doesn't seem ready yet. I know how badly she wants things to be back to normal so, I figure she will when she's ready.

Holly & I are secretly plotting to take her for a short shopping trip. She needs to get out of the God awful house for a few hours. We all do. She is self conscience about the walker & wheelchair though. I know we are learning & growing from this experience but, it's still hard to accept. Hopefully, she will be up for it & will enjoy it.

I got a letter tonight asking permission to use my KatrinaTribute.info Flash presentation at Burning Man. This is another HUGE honor bestowed upon us & it couldn't have come at a better time. My daughters served as advisors for this very special project. They deserve credit for the artistic & inspirational input they brought to it. They both have a lot to be proud of. It's almost been a year since Katrina happened. I feel very blessed that I was given the opportunity to help & get to know the many victims affected by the horrible disaster. They have touched my heart so deeply & I'm a richer person (of spirit & soul) now because of them. Their strength & courage has inspired us. It serves as an example that despite devastating circumstances, life continues & eventually overcomes the obstacles in the road to recovery.

Joined: 01/03/04
Posts: 37

Progress has been made yet again. She had her first zero on the last cath we did Saturday! I even tried another cath tube to make sure it wasn't clogged. She hasn't been able to void her bladder completely since but, at least we know it's possible. The amount cath'd is slowly reducing itself. It seems some days are better than others though. One time we will only cath 25 cc's, another it will be 150 cc's. The zero was a pleasant surprise & we hope it's a sign that this will all be over soon.

Ashley got online for the first time yesterday, since we have been home. She loves web design & it was really good to see her make the effort. She couldn't stay on for very long but, I saw a glimpse of her old self coming back to us. We have missed her.

She has two appointments this week on the 31st. One with her Urologist & another to get a CT scan. She hates the whole Urology thing but, who could blame her. I sense she is having a little anxiety about it too. They didn't give her good news during her last consult before leaving the hospital. I think the news will be better this time around though & will try to ease her fears.

Her ankle is still giving her quite a bit of trouble. It has been almost 20 days since the accident & it still looks like hell. I have never seen a sprain look THAT bad for so long. All her other bruising & swelling has pretty much subsided but, her ankle still looks like hell. She has more pain from that than she does anywhere else in her body. I'm willing to bet there is more wrong with it than a sprain. The X-rays come back negative for a break though. I need to push them to do an MRI and or CT to figure out what else is going on with it. It is greatly hampering her ability to move around. She needs stable footing with a broken back & she doesn't have it. It's making things so much more difficult for her. I fear surgery might be needed to fix the problem though and that the last thing she needs to happen right now. That will set her back even further.

Joined: 01/03/04
Posts: 37

Ashley's appointment on Thursday went OK. Basically the same stuff we already knew. We must keep cath'ing her until she is able to empty her bladder all the way. It's so heartbreaking to hear her Urologist say it may never happen, even though we already know it's a possibility. He also said she needed to see a Gastro doc for the nerve damage causing the diarrhea. It continues to plague her & make life miserable. I worry that it's doing further harm to her health.

When your given a healthy baby at birth you never question it. When your child becomes sick or injured though, your damn sure going to ask why. I struggle with the reasons why this happened. Life was extremely harsh for us before this. Our run of bad luck is unbelievable & if I hadn't experienced it first hand, I would question it's validity. Since 1999 I've been through a divorce, severely abusive relationship, homelessness, unplanned pregnancy out of wedlock, parents disowning me, remarried, rocky relationship, extremely bad financial problems, fired from my job due to illness, diagnosed with a life threatening disease, forced to go on public aid, daughter with emotional problems who wanted to commit suicide, 2 kids diagnosed with ADD/ADHD, son who almost died from a vaccination, husband with employment problems, Mother diagnosed with a terminal Cancer & my own inability to get proper medical care, among other stuff that is too numerous to list. My life sounds like a bad soap opera. :roll: I just can't understand why we're unable to escape from this funk. We have struggled for so long & have tried so freaken hard to get somewhere. We have tried harder than most & still having nothing to show for it. I just wish someone would take the curse off, haven't we suffered enough? Really, what did we do to deserve this? It's just so hard to grasp the reasoning why.

Ashley moves around a bit more now. She is unable to bend over or lift her legs very high & shuffles/limps when she walks but, at least she can walk. I'm not sure when or if she will be able to return to school. She may never be able to if her incontinence problems don't clear up. It's not like I can cath her at school.

It's extremely depressing living with this uncertainty. I try to stay positive for everyone's sake but, this is wearing me down. Most days I just can't keep up but, this was a problem before the accident. Living with SLE means I have VERY limited energy & strength. It interferes with my ability to care for myself, little alone everyone else. Before, we had a system that worked. We all pitched in & managed to get things done. Now, it's all shot to hell. I'm so easily exhausted but, must be on call for Ashley 24/7. I find myself so frustrated, unable to do the things needed. Eric has to get Ethan ready & on the bus in the mornings because I am too weak to do it. I force myself out of bed for Ashley's care, only to go right back after. After Eric puts in 10 hours at work, he must come home to do even more & care for our two youngest. He is at the end of his rapidly fraying rope, we all are. I spend quality time in the bathroom crying. I feel like such a failure. I force myself to do more, only to pay for it dearly the next day. I am out of spoons & can't borrow anymore:
http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php#more

I am praying so hard that something, anything goes right soon.

Isaak turned two today & it's hard to believe how much my little baby has grown. Even with him being my fifth child, it still amazes me. They grow up too fast but, it's so great to have the opportunity to watch them change. It wasn't hard to put all the anger & depression aside when I saw his face light up. He loved everything he got & gave me the gift in return. I was able to forget the tough times ahead, if only for a short time. Despite everything, I can still see the blessings in front of me.

Joined: 01/03/04
Posts: 37

We had a nice Labor Day weekend. We started it with junk food & games Saturday night. We played Apples to Apples for the first time & absolutely loved it. I was worried my 9 year old son, Adam, wouldn't be able to understand well enough to play but, he did great! At one point the card with Adolph Hitler was played & Ashley asked him if he knew who that was. Adam got all excited explaining that he knew all about him. He started talking really fast & said: "He was a really bad man who did awful things to the Jewish people." "He put them in CONSTIPATION CRAMPS"! ROFL Of course he meant to say concentration camps but, got tongue tied. We all laughed so hard that we had tears streaming down our faces. Only from the mouth of babes.

Today Eric, Adam & Ethan worked on building a tree house. The boys have wanted one for a long time now but, we just couldn't afford the lumber needed. When Pizza Hut was being built next door, Eric asked them for any scrap wood. We got enough to get a good start on it & the boys are so proud of it. It's just a small platform about 6 feet off the ground but, it's a start! They plan on going to other construction sites & asking around for more. It has become their weekend project & gives them something to look forward to.

We also cooked out over our fire pit & made smores. I want my kids to have a childhood like mine, spent outdoors, exploring & learning first hand. I worked on a Shetland Pony farm growing up & nothing could beat the experiences I had. I was horse crazy (still am) & there is an old saying that I believe in: Nothing is better for the inside of a child than the outside of a horse. It's just a shame I had to give up the land during the divorce. I really miss my menagerie of animals. At least my oldest 3 kids had the experience & responsibility of living on a farm. They even got to show horses, just like I did when I was younger. They are memories I will carry with me for a lifetime & I hope they do too. Perhaps someday I will have another farm & will be able to give that to my youngest sons as well.

Ashley continues to improve. She does a little more each day & is in good spirits. She fights hard to regain all that was lost just 28 days ago. It seems like it happened yesterday but, at the same time, like a lifetime ago. I can remember every detail as if in slow motion & it haunts me in my dreams. I will never get over how close we came to losing her. I try not to be too paranoid but, it's hard to let go & be the parent I used to be. I worry when the time comes again, will I be able to let them get in a car with a friend? A part of me say's it's irrational fear & another tells me to do what I need for their protection. I can't roll them in bubble wrap before sending them out the door but, the thought has crossed my mind.

I do know that they must be able to live their lives & with that comes risk. There is danger in everything & it's a part of life but, that doesn't make it any easier on parents. Why doesn't anyone ever tell you how damn hard it is to let them go & not worry? Children become your heart & soul. Objectivity flies out the window once you look into their eyes that first time. You really never grasp the depth of how much they mean to you until you come close to losing your child. I thought I did before. I mean, I loved my children with all my heart & soul but, didn't feel it in my bones until this accident. It's like someone reached into your chest, ripped your heart out, stomped all over it & handed it back, telling you to go on. But, that really doesn't even describe it & I'm not even sure I can put it into words. I just know I will never forget that feeling. I hold so much respect for parents who have lost a child. I honestly don't know how they make it through & hope I never do.

Joined: 01/03/04
Posts: 37

Time ticks by & Ashley is still facing some tough issues. She can return back to school when she feels up to it but, will still need to be cath'd. That would require the school nurse to do it & she is uncomfortable with that. Not that anyone blames her. By staying at home, she misses the benefits of classroom interaction. She is in Spanish 2 this year & trying to learn a foreign language through Homebound is a nightmare. Of course returning to school raises some tough issues. The school will be required by law to accommodate her. I'm requesting a 504 meeting soon to address all the issues that she will face & make sure they will be prepared for her to return. There are many things that must be taken into consideration to make sure Ashley's needs are properly taken care of.

I'm not sure how soon she will be physically ready to return though. Diarrhea & nausea still plague her on a regular basis. She still has pain & is weak. For every day that she had to remain immobile, it will take 10 days to regain what was lost. She needs to see a GI doctor & maybe there will be some medications she can take to control the problems she has. I know how badly she wants to return but, we both feel she won't be ready at the six week mark. Yet again, only time will tell.

Hope & prayer are two words that are frequently heard around here. It's all that we have to hold onto right now. The uncertainty is draining all of us. I'm still struggling to keep up. It's hard to balance personal needs with a life threatening illness & everyone else's care. I have my good days & bad but, the majority have been extremely rough. I don't really know how much longer I can keep going. So, to use those words again, I'm hoping & praying I won't crash but, odds are against me. I will keep fighting though & do my best.

Joined: 01/03/04
Posts: 37

It's been one month today since the accident. Our lives are changed forever. It seems like a big blur & I still feel like I'm in a state of shock. After a month, you would think I would have processed it all by now but, I just haven't. I guess closure will never come for me until Ashley is healed more & things are closer to normal.

People ask about her condition & are shocked that she is still the same. I guess I can't expect them to understand the dynamics involved for this type of injury when I struggle with it myself. They figure if she can walk then everything else is just fine. I wish like hell that was the case. Fact is, nerves take MUCH longer to heal than bones, if they even heal at all. She will be in healing limbo until her body can bridge the gap. However, I find myself annoyed with well meaning family members/friends calling to see how she is & expecting change each time. It's just not going to happen like that, if it ever happens at all. I upset them by being frank about it. They live in denial but, it's something I don't have the luxury of doing. I am neck deep in reality.

I took Ashley shopping again yesterday & she did really well. Didn't need the wheelchair at all. She still doesn't know what to do about school & I don't either. Returning back too soon could be disastrous though. I think giving it more time would be the best option for now. She still has so many problems with her stomach, bowels & bladder that would make school very harsh to handle at this juncture. I know she is missing out on so much but, this isn't just a broken arm or leg.

I certainly hope & pray this next month goes better than the last.

Joined: 01/03/04
Posts: 37

Ashley has two appointments next week, one with her GI doc & another with her Orthopedic doc. We will have to determine what the next step will be. I still don't think she is quite ready to return to school just yet. Her ankle has improved some & she can move around a little better now. She's still plagued with bowel & nausea problems. Hopefully, her GI doc can give her medications to help control it. Her pain level has decreased some but, still not enough to go without medications to keep it in check. She also has the bladder issues to contend with as well & this is a big issue for her return to school. I know she doesn't want the school nurse cath'ing her but, she really has no choice.

I just hate this for her. I know how badly she wants to return. I want to make things easier for her but, we are at the mercy of an unrelenting condition. She has so much to deal with & it never seems to end. I know in her heart she wanted to believe this would be resolved by now. Once she realized how difficult going back to school would be, it crushed her. She just wants to be a normal teenager & do the things she used to. A friend invited her to go to football game but, I had to say no. It just isn't a good idea at this point. I constantly have to be the bearer of bad news & it's breaking me.

As if life wasn't fun enough already, I have an appointment with a doctor to access my cognitive function problems, courtesy of the state disability determination examiners. I guess the testimony of my other doctors wasn't good enough for them. How can an assessment by a doctor who is paid by them be fair? All they really need to do is talk to friends & family. They can give first hand accounts of how my bad my memory & speech difficulties are. I used to be a very articulate person but, now I struggle to communicate. I have to write everything down & have Eric keep track of it. The only reason my posts make any sense is because typing online gives me the opportunity to correct mistakes. I often have to go over it many times & always use spell check. It can take me hours to do a simple post like this.

Something else that bothers me a great deal is my relationship with Eric. It's been very rocky for years. Some people know all too well how bad it's been but, others really have no clue. I try to hide it as best I can because I don't want other people to pass judgment. I have been through so much with him but, there are many reasons why I must stay. One being the inability to support myself & the children having a disability. I have tried working but, get fired for missing work from being so sick all the time. I struggle very hard to just do things around here but, require so much help. Eric shows his resentment towards me almost daily over a condition I can't help. He makes living here unbearable most the time. At the same time though, he has helped me. It's a double edged sword that cuts very deeply. He has anger issues & has a very tough time controlling it. He lashes out verbally, with no regard for the people it hurts. Luckily, it's aimed mostly at me & I step in the middle when it starts to overflow onto the kids.

Money issues don't help matters any. He has a shitty, dead end, low paying job but, he must continue working there. Ashley & I have so many appointments he has to miss work for that cannot be helped. He is on FMLA & would have to wait a year elsewhere to get it again. He undoubtedly would be fired for these issues had it not been for FMLA. A job that was only supposed to be a short term thing has turned permanent. He, of course, blames me for that & lets me know it every chance he gets.

He blew up again last night at me over money. Luckily the kids were in bed. He started yelling & pointing out how it was all my fault. I have to justify to him every dime I spend. I guess my answers were not good enough because he started throwing things. I usually only spend money on things we need like toilet paper, tampons, dish soap etc. I NEVER spend any money on myself. The only thing I bought extra was the kids stuff for Halloween and a few inexpensive decorations. To him, making sure the kids had costumes was a waste of money that he felt should have gone to other things. His reaction was uncalled for undeserved. Most people wouldn't treat a dog that way, little alone their wife.

We have no sex life. He doesn't touch me or act affectionate towards me in any way unless he is need of sex. That happens maybe once every 3 months, if even that. He, again, blames lack of sex on me. I make him mad & thus he has no interest in touching me. I can't ever do anything right in his eyes, no matter how much I try so, I gave up a long time ago.

He spends the majority of his free time behind his computer, ignoring the rest of us. That is, when he's not yelling or complaining about something insignificant, like the closet door being left open. He makes a federal case out of the most ridiculous stuff. His reaction is the same for everything, whether the car is broke or he has a hang nail. Everyone (including HIS family) has tried telling him his reactions are unacceptable behavior but, he either doesn't listen or just can't control it. I have tried everything in my power to help him & be there for him, to no avail. It's like talking to a brick wall. It has even less weight because it comes from me. It's like having an extra 2 year old, throwing tantrums in the middle of a store & embarrassing you. I really don't know what has kept me from having a nervous breakdown.

People advise me to leave but, I really wish things were that simple. I have walked away before & tried my hardest to make it on my own but, ended up homeless. No one is willing to take in someone who is sick & has 5 kids, for an extended period of time. They expect me to suck it up and be able to keep a job. That's just impossible when your body is failing, your so anemic you pass out & your exhausted, in so much pain you can't stand up. The medications can only control so much & the rest is up to God. Disability only pays a whopping $604.00 a month. There is no way I can support us on that.

Then there are those that say we should seek counseling. My insurance doesn't cover it for us both so, he can't receive it. How can we pay for it when we can't even pay the deductible for Ashley's care? I feel like punching them when they tell me about the sliding scale many have to help. Helloooo, McFly, hellooooooo!!! What don't you understand about WE DON'T HAVE THE MONEY? No one does it for free & until someone does, we can't do it.

I guess the real reason I keep this from most people is I'm really tired of getting advice that doesn't help. It wears on a person when someone claims to have been there but, you find out that very few have a clue. I am stuck here unless some miracle changes that for us. I haven't given up though. I guess I still hold hope that my marriage will improve. I might as well try to make the best of it & that's all I am trying to do, since there is no other options available right now. I probably have a better chance of hell freezing over.

Joined: 01/03/04
Posts: 37

I have say that caring people have made all the difference in the world to my family. I really don't know where we would be without their love & support. They have given us so much by reaching out. So, when someone is in need, never doubt if your kindness has made a difference. It has & it always does.

In this entry, I am quoting a PM I sent today. It explains my situation in better detail & saves me from tying it again. A very compassionate person reached out to me & this is my response to her:

Thanks so much. Your an incredibly sweet person. The advice part made me laugh. I guess I should clarify that I'm not against advice in general, just the marriage kind. There was a time when I went on a kick, trying anything & everything under the sun to fix it. I got tons of good advice, it just didn't work. Many, many people think I should just leave but, when is life ever that simple?

I have been through everything with him. In the beginning of our marriage he beat me. I didn't just take it though. I eventually called the police & had him arrested. I thought that would solve things but, it made things so much worse. He ended up in a homeless shelter & was forced to go to counseling. In addition to that, he had to pay back the state for everything. This happened at the very beginning stages of my disease, before a name was put on it, & I was struggling with work. I needed him to stay out of jail & help me support the kids. We were dirt poor & the state was bleeding us dry. We eventually paid them off completely but, things were still hard.

That was 4 years ago & he hasn't hit me since. That doesn't stop him from using his words against me & getting in my face. He will sometimes grab me by the arm & hold me against my will but, it has never gone past that. He also throws things that have come dangerously close to hitting me. He does frighten me when he goes off to that level but, thankfully it isn't that often. Usually it's just him yelling, stomping & slamming doors, like a two year old throwing a tantrum. He will do this in front of family & friends too. It's so embarrassing & people look at me as if I am supposed to do something to stop him. The only thing I can do is apologize profusely. He has alienated people from our lives because of his inappropriate behavior. I & many others have pointed out to him, till we are blue in the face, that his behavior is unacceptable. He always had an excuse, passing blame on other people. I just wish he would take responsibility & realize he owns his emotions.

I can't say that it's been all bad over the years. I do love him very much & we have had some happiness together. We both adore the kids & enjoy time with them, as a family. It's just hard when the bad times are more frequent than the good. I'm a positive person & try to keep things moving in the right direction. I'm not even sure if Eric would even act like this had our financial situation been better. That remains to be seen though. I do know that no matter how bad things are, it doesn't justify his behavior. I get that. I'm not a miracle worker though & I just go with the flow as best I can.

I believe the only way true healing can take place is through counseling & treatment for PTSS (post traumatic stress syndrome from being in Army Special Forces throughout most his 18 year career). We have tried going through Veteran affairs for it but, we cannot afford the almost 2 hour drive down to the VA hospital for regular treatment. So we sit & wait. Hoping & praying that something changes. If I finally get approved for Disability (I am listed as disabled through Human Services but, getting money for it is something completely separate), then we will have more money coming in. Granted, it's no cash cow but, every little bit helps. Hopefully it will be enough to improve our situation significantly.

Sorry for writing a novella. It's a complicated situation that is hard to explain. I do appreciate you reaching out. Most people wouldn't touch this situation with a 10 foot pole.

Lisa

Joined: 01/03/04
Posts: 37

Ugh! When does it ever end? If someone has the answer for that one, please let me know. Holly has cut the end of my frayed rope. I noticed that she hadn't giving me progress reports from school. I called the school & they said I should have had some by now. So, I confronted Holly. She said she forgot to give them to me & then she stated she lost all but one. It was her AP English class which she always gets good grades in. OK. I was born at night but, not last night. She is so obsessed with her job that she works too many hours & neglects school work. We feared this would be a problem from day one & she has tried her best to hide it. She finally confessed she *might* be failing two classes so, I have emailed all her teachers requesting grades.

We have been down this road TOO many times with her. She pits people against each other, lies & manipulates to get what she wants. It saddens me that I feel this way about my own daughter but, it's true. Failing to graduate from High School IS NOT an option. I can appreciate the fact she loves her job but, her priorities are out of whack. I simply suggested that she cut back on her hours to allow more study time but, she threw one of her drama queen fits. She swears she doesn't need those credits to graduate but, that has no bearing in this. We expect her to get passing grades (a C or above) in ALL her classes regardless.

She has also been neglecting vital chores around the house. I know she has a lot on her plate so, I let it slide. I tried discussing it with her nicely several times but, she doesn't care. She neglects pets that she begged us to have. She leaves messes everywhere & she expects other people to clean up after her.

I pointed out to her tonight that she was inconsiderate of everyone else by not contributing in some way. I also told her I would be charging her rent if that's how she was going to act. She blew up at me and announced that she was moving back in with her Dad. Yeah, good luck with that. She had a horrible time living with her father before & I don't know what makes her think things have changed. He made her live like a nun & she wasn't allowed to have a social life beyond attending school. He lives really far away from where she works &, without a car, she would have to quit. I don't know what else to tell her at this point but, don't let the door hit you where the good Lord split you. I refuse to play this games with her. Once she moves out, she will not be allowed to live here again.

We have tried everything to help this child. We have been there for Holly & loved her dearly through it all. She repays us by shitting all over us. I really don't know what else to do with her. I am at a loss.

Joined: 01/03/04
Posts: 37

I heard back from 3 out of 5 of her teachers that I emailed last night. The news wasn't good but, we already knew it wouldn't be. Holly is failing 2 of the classes & her grades are slipping in the other. I confronted her but, she threw another fit, called me a bunch of names (that the profanity filter won't allow me to repeat) & stormed into her room. She tried taking the phone with her to keep me from calling her father. I promptly got it back & later got in touch with Him.

I spoke with him for over an hour & he agrees that something must be done. I know he made promises that he will never keep just to get her back in his home. However, once she has moved, he will come down on her like a bag of bricks. I guess she learned the manipulation game well from her father.

I know Holly regrets starting this because she knows what will happen with her Dad. I told her it was HER choice to go there but, she is too proud to eat humble pie & admit she was wrong. I will not make this easy on her though. She has some really tough lessons to learn & she has a very long road to travel. I sincerely hope her father will be able to get her on the right track & she finishes High School.

It will be one less thing to stress over on a daily basis around here but, that won't stop me from being worried about her. It will lighten the work load considerably though because I won't have to clean up after her. She always was a very messy, unorganized child. We tried everything to help her with this but, all the Rubbermaid containers, shelves & folders in the world couldn't fix this mess!

Ashley is actually happy her sister is moving out. She will have a room all to herself for the first time. It also saves her some of the grief Holly has put her through over the past several years & especially the last 6 weeks since the accident. She blames Ashley for 'disrupting her life' and has been very vocal about it. Ashley neither needs or deserves this. Things will be a lot more peaceful, that's for sure.

Joined: 01/03/04
Posts: 37

It has been another VERY rough week for us. We found out my Aunt Anne is in the hospital. She is my Mom's sister & has been taking care of her through all the cancer treatments. She is like a second Mom to me & it hurts to see them both so sick. My Aunt has had many health issues throughout the years but, this time around it's bleeding ulcers. It's very serious & her doctors having a hard time controlling all the problems related to it. She needs to get better soon because we couldn't handle loosing her. Mom really needs her to lean on & I know she is worried sick about her big sissy.

My Mom is suffering from chronic bronchitis & sound horrible over the phone. I know she is also very weak & has lost more weight. She has scans this week to see if the newer Chemo's are still holding the mets at bay. The last sans were promising but, with this type of cancer you never know. She is terminal & only using the Chemo to buy some time. I have worn out my rosary praying for just a glimmer of hope. A small number of people have been able to make it to the 5 year mark, just praying hard she will be one of them. We could really use a miracle because they are in short supply around here.

We had to reschedule one of Ashley's appointments this week because I was too sick to take her. I'm always at the mercy of my disease & I HATE it. She did have her ortho appointment today though. She has been extended on the homebound schooling because she is not quite ready to return yet. She is going to physical therapy for the next six weeks, mostly for her ankle. It's still giving her so many problems & we are hoping to avoid surgery. He said she is doing well considering how much trauma she has been through. However he reiterated again that the bowel & bladder nerve damage may never heal completely. She is on the road to healing though & we are grateful about that.

Holly's move last week went smoothly. Ashley helped me a little with packing up her sister's stuff. We didn't want a big scene because Ethan was really upset over it & is too young to understand. We figured the best way was to have everything ready to go out the door. Holly of course left a big mess behind for us to clean up. I saw her a couple of days ago & she didn't look very happy. I knew she had glossed over in her mind how bad it was living with her father & it's all starting to come back to her now. I will stick to my guns. She made the bed, she can lie in it. Things are running smoother though & there are a lot fewer messes to pick up.

AF decided to pay her visit this week as well & I just want to crawl under a rock. My periods have gotten so unbearable. I have cramps so bad that I can hardly sit up. Thank GOD for pain medications! Right now they are keeping me semi functioning.

Ethan loves Kindergarten SO much. He can't wait to get on the bus in the mornings. He is doing so well with it too, much better than we had anticipated. Being that he is clown, I thought for sure I would be spending quality time speaking with the principal. He has only gotten two 5 minute time outs & we can live with that. His teacher said he's quite the charmer too. He tells her everyday that she is pretty & looks like a princess. He also gives her a big hug & tells her "I love you Ms Lee". She commented that he certainly knows how to get on your good side & she looks forward to seeing him every day LOL

Isaak & I are best buddies now. He has gotten even closer to me (if that's possible) since Ethan started school in August. He is quite the charmer too with a head full of curly hair, big blue eyes & a smile that can melt hearts. He is driving us nuts though with his ability to get into everything, even child proofed stuff. There isn't anything that clever little devil can't figure out. He's a keeper though & we wouldn't send him back even if we could!

Adam will be coming over this weekend again to help us do Halloween decorating. We plan on doing much more than usual this year. He and Ethan are very excited about it. I really enjoy doing stuff like this with them. I will have to save up spoons to make sure I have enough strength to enjoy it too.

Joined: 01/03/04
Posts: 37

We are still under so much stress that never seems to end. The Lupus monster is back & has made me VERY sick. I have spent the last 3 days in bed with a bladder, kidney & upper respiratory infections. I may need to be hospitalized before the week is over because the antibiotics don't seem to be working. My doctor strongly suspects I have kidney involvement now & in the beginning stages of Nephritis. My blood work wasn't good either & points to confirming our fears. Eric has missed so much work & we can't afford for that to happen. We really don't have any choice though. I'm so tired of the wolf always being at the door.

My Mom called to let me know that she is taking a break from the Chemotherapy. She has been going through this for a year now & the treatments have stopped working. They want to start her on a new Chemo (this will be her 5th switch) but, she can't handle it again right now. She needs to get away for a few weeks to sit on the beach, recuperate & think. Despite the high risk that she will have a crisis on the plane, she is flying to Florida tomorrow night with my Dad. I completely support my Mom's decision to do this & I really understand why she needs to. My sister, on the other hand, is upset that she is willing to take this risk. It's her life though & she should live the end of it the way she sees fit.

I did let my Mom know how much I love her & that no one will ever be able to fill her shoes. I'm just praying hard that this is not the end but, I know in my heart it probably is. I don't know what I will do without my Mom to lean on & I'm asking God to please just leave her here with us awhile longer. I want Mom to feel at peace knowing that we will be ok. Things have been so rough for us & I don't want her to leave with all this worry on her shoulders. I have tried putting on a front for her but, you really can't hide anything from your mother, they know all. If I get approved for disability, then Mom will know that I will get the medical care & help I need. It would be a miracle though, considering that Tennessee has the highest rate of all 50 states for rejection. Life isn't fair but, that is the reality we live with each & every day.

If that wasn't enough, my oldest daughter is being a major pain in the arse. She moved in her father a few weeks ago & is here this weekend visiting. She is making huge messes, refusing to do her part & mouthing off, without any regard for who it hurts. She knows the magnitude of stress we are under but, is too self absorbed to care. I didn't raise her to act this way & I'm ashamed that she can be so heartless.

We still have Ashley's ongoing condition to deal with. She continues to improve but, we still have some hills to climb before this will be over. It will take years for her body to completely heal but, she has conquered so much already. They start fall break on Monday & will be off school for a week. We plan on having Ashley return to school the following week, with a little luck. I have contacted the school for the 504 meeting & waiting to hear back on the date it will be held. It will be a huge triumph for her on the day she returns. I know at one point she thought it would never happen. We are so proud of how well she has done & will continue to help her through it all.

With all the stress though, Eric & I are just trying to keep our wits about us & not take it out on each other. We are both at the end of a rope that is completely tattered & frayed. I know things have to change sooner or later but, we need for it to happen soon.

To all who read, please keep the prayers & positive vibes coming. It gives me hope to know you are out there, supporting us during this very rough time. Who knows, maybe God is sick of hearing about this by now & will grant us a tiny miracle just to shut us all up Lol

Joined: 01/03/04
Posts: 37

To update this, I am going to quote the posts I made on the Lupus support site. I'm not sure what all I've posted here about my recent medical problems but, felt this would be the easiest way to do it....

10-05-2006

Yet another fun day in the land of Lupus. I woke up this morning in horrible pain, with a fever, ulcers in my mouth & enough blood in my urine to visibly see it. Hubby had to take another day off work to take me to my doctor.

I knew they would want to get a urine sample so, I asked for the cup right away. I drank water & waited till I had to 'go'. The big moment arrived & I filled the cup to the brim. I suddenly realized that the sample cup had a hole in the bottom of it, as blood/urine ran all over me & the floor. I said to myself, "OK, I can handle this" but, they didn't have any paper towels in the hand dispenser. Grrrrreat! I have to use their crappy, need to use half a roll to dry my hiney, cheap toilet paper to clean it up. I pretty much used all they had in there to get the job done.

So, I go out to inform the staff what happened & they hand me another cup. Hubby gets the brilliant idea that he will check to make sure there are no holes in this one & crushes it in the process. He goes back up there to get another cup. I hear a roar of laughter as they see how badly he annihilated the last one.

Finally we have success! I peed, the cup didn't leak & it had blood in it again. Doc surmises I must have a bladder/kidney infection then writes a script for antibiotics, without even taking into account the last urine results. He didn't run any blood work. I really hope he is right because the last time I saw that much blood in my urine, my platelet count bottomed out & I was hospitalized for a week.

I also finally found a link late last night that addressed high C3 tests associated with the beginning stages of kidney disease with Lupus. I saved it in my favorites & was going to post it but, I can't find it now because it's lost in a thousand links Oh well. At least my sense of humor is still in tact.

10-08-2006

The second antibiotic wasn't working & it forced me to make a trip to the ER last night. The pain has become unbearable. If I ever had any doubts that it was affecting my kidney's, it was quickly dashed by pain that had me doubled over yesterday (& today).

Usually our local ER stinks when it comes to care but, it must have been a good night to go. They were wonderful to me. The doctor on call was put off by the fact that my GP didn't give me stronger pain medications. He wanted to give Mepergan (Demerol) but, the last time it made me shake uncontrollably for some reason. So he decided Tylox was a better option & started me on the maximum dosage right away, even before they ran any tests. He wanted me comfortable first

They then ran blood & urine tests, confirming I have a raging infection in my entire water works. He also immediately started me on 2 other medications, Macrobid & Pyridium. They wanted to keep an eye on me for a while because I guess I looked so bad (as my husband puts it, like death warmed over). So, they held me there for a several hours.

He warned me that the Pyridium would make me pee bright florescent orange because I've never taken it before. He really wasn't kidding! If we get stranded in the ocean, I would be able to pee in the water & signal planes.

They finally felt comfortable with releasing me this morning. They sent me home with all three medications & instructions for bed rest/no lifting. I'm not feeling any better just yet but, they said I need to give it a few days to know for sure. I'm just hoping hard it will work this time.

10-10-2006

Kidney infection troubles, please help (possible emergency) ...
*as posted in a new thread*

I am in a bad flare. I started out with a bladder infection that quickly spread to my kidney's about 10 days ago. (See my posts in tests & procedures for the full details). I have been extremely sick & the antibiotics are not working.

I went back to my doctor again today because 3rd antibiotic, prescribed by the ER doc, is not working either. These are not wimpy antibiotics either: Zithromax, Levaquin & Macrobid. They also gave me Pyridium & Tylox for the kidney pain & bladder spasms. My urine has consistently come back (including today) with very high levels of red blood cells & white blood cells with protein. The pain is unbearable, my blood pressure has been all over the place & they are having a hard time getting a correct reading. Today the top & bottom numbers were very close with only a few digit difference. My face has also been swelling & I have nausea. He also determined I'm dehydrated because I have a hard time taking anything in.

I feel horrid, even worse than before the meds. I noticed while typing this that my hands are shaking quite a bit now too. My GP prescribed yet another antibiotic & more pain medications. He is afraid to change my dosage of Prednisone because the last time he did it my blood pressure went through the roof. He has NOT run a kidney panel on me to see where my level are BUT he did do the Lupus panel *2 weeks before* the crap hit the fan. My C3 levels are greatly elevated, along with my sed rate & RF. I'm also anemic again (what's new). He admits he doesn't know how to interpret all the results but, has witnessed me get progressively worse over the years.

We have another major problem though, I have maxed out the allotted medications that Medicaid will pay for (5) each month. They do have a short list of medications that do not count against that total but, believe it or not, antibiotics are not on the list at all. We already spent ALL we had on other medications & now are completely broke. I explained this to my doctor & he went to look for samples but, came back empty handed. The Pharmacist couldn't even read what he wrote on the script & they had to call him but, he hasn't called them back that I know of...not that it will make any difference because money doesn't grow on trees.

I don't have a Rhuematologist to call because we've had a hard time finding one that accepts Medicaid. I finally have an appointment on the 19th of this month but, that is the soonest they can get me in & can't help me until after they see me. I don't have anyone else to turn to. Our local ER is essentially a joke & to get decent care, I have to make a 70 mile trip to Nashville in a car that is old enough to buy me a drink. I feel like walking death. I am scared & really feel that SLE is attacking my kidney's now, doing irreversible damage.

I felt he should have hospitalized me today to ensure this was treated properly & to run further tests to see if I have developed Nephritis. I really need some input here because I am flying blind....should I be worried, consider this an emergency and go to Nashville tonight? Or should I continue to suffer through this infection until my appointment on the 19th? Please help...

10-11-2006

Well, I continued to feel like death warmed over into the early morning hours & decided I had to do something. I went to the local ER at 5 AM today, despite their long running record of being incompetent. I got there & they gave me an IV immediately for dehydration.

They ran blood tests that came back with elevated Bun, creatine, ALT & AST. The urine results came back a little better showing that the current antibiotic is starting to control the infection but, I still have protein & red blood cells present. The attending physician wanted me admitted to be treated and called my GP for approval. He flat out refused to have me admitted & wanted to see me ASAP. Needless to say we were livid.

We wanted to give him the benefit of the doubt because he has treated me for 3 years now & over all, has been very good to me. He said he was worried that another antibiotic would be system overload & He also said that's why he waited to call the Pharmacy back; to give the antibiotic one more day to do the job. The urine test taken today say's it's finally under control so, no need to switch. We agree with this after today's results.

He also said that he is very worried that I would get something in addition to what I already had by staying in *that* hospital & my compromised immune system puts me at great danger for it. The last person he admitted with a similar condition didn't make it out alive for that very reason. I think it's very sad that he can't even trust the local hospital. I know the only reason he continues to practice in this town is because he genuinely cares about his patients.

He wants me to see the Rhuematologist on the 19th because he is the person that will know how to treat it properly. If the new Rheum stinks or if I get any worse, he will be admitting me to Vanderbilt in Nashville for treatment. He feels the numbers were not bad enough to constitute an emergency but, certainly significant in pointing to the beginning stages of kidney involvement.

I got the IV fluids I needed to get me over the hump & was given a few more medication to take home in hopes of keeping things in check until the 19th. I'm so high on Dilaudid & Zophran that I am feeling no pain & can't even remember what kidney's are Thank god for spell check & my husband becuase you guys would be here all day trying to figure out what I typed.

Poor Ashley had her GI appointment canceled once again because I was too sick to take her & Eric couldn't leave me. Despite this, we are moving forward with her returning to school next week. Haven't heard back from the 504 meeting people yet though so, I have no clue when that will be held. Hopefully I will be well enough to attend Sad

Eric has been wonderful to me & very supportive. I know he is very worried about how fast I have gone down hill. This is the sickest he has ever seen me but, this is only the beginning. With each flare I get worse. The latest developments are not good at all from what I gather. It most likely means my kidney's are failing.

Anyone have a kidney they can spare? ROFL Sorry, that's the pain medications talking Biggrin I will update again when I can.

Joined: 01/03/04
Posts: 37

Today was Ashley's first day back at school. We had the 504 meeting at 7 AM & all went really well. The students & teachers were so happy to see her back. This is a huge triumph for her & I couldn't be more proud.

On the way to school this morning we passed the site where the accident took place. This is the first time Ashley has by there since it happened. I think it was emotional for us both but, in our usual fashion we cracked a joke & laughed it off.

I hope things continue to go well for her. They did say that the staff is willing to do what is needed to help her. So far, so good! She was really tired once she was back home but, took a short nap & has planted her butt in front of the TV. It's good to finally have her back Biggrin

Joined: 01/03/04
Posts: 37

October has been a month of so many ups & downs. Ashley returned back to school & it's going well for her. She got A's & B's on her report card & is adjusting well to all the activity. We stopped cath'ing her on a daily basis because the amounts have been low enough. I still have to periodically check to make sure the nerves are not inflamed again & causing retention. This is very positive sign though that this will be the end of it. Her stomach & bowel still give her troubles from time to time but, it's not on a daily basis like it was before. Her ankle is still giving her some problems & her back often hurts but, over all, she has made great progress.

I can't seem to stay out of the doctor's office or hospital. My liver has decided to join in the act yet again. There was large amounts of bilirubin in my urine Thursday & it was cause for alarm. I had to make a trip to Vanderbilt to be evaluated yesterday. I am so sick & tired of being sick & tired. Anyone interested can read the details here:
http://www.thelupussite.com/forum/showthread.php?t=60072

My arm looks like I have been driving nails up it. They have such a hard time getting IV's in me or blood from me & have to stick me several times. I hate going out in public because I get stared at with the bruising, rashes, hair loss & all over body swelling I have. I also have a hard time getting around & often require the assistance of a cane, walker or wheelchair. I know people don't realize how uncomfortable it makes me feel but, really, they need to think before they react. I'm not contagious & I don't bite. I need to do my grocery shopping like everyone else does. I'm tired of dreading being seen in public & working so hard to hide my illness.

My Mom is also going down hill so fast it seems. The new Chemo is causing so much swelling. She can't talk without coughing & seems be slipping away each time we talk. I want so badly to make the 6 hour trip & go see her but, we can't afford it. Our car is so old & hasn't been running right. My health is so bad that I cannot make the drive by myself. Not to mention who will care for the kids while I'm away? We are in such bad shape financially because Eric has missed so much work from Ashley's accident & my unrelenting illness. I'm not even sure how we will pay the rent this next month. I really don't know what to do at this point. I don't want her funeral to be the next time I see her.

As if that wasn't bad enough, I got the rejection notice for disability. I called immediately, demanded an appeal & they are sending me the paperwork. The lady on the phone said that only about 5% in the state of Tennessee get approved the first time around. We have the lowest approval rate in all 50 states. I guess I would have to essentially be a quadriplegic to get approved. How could I be denied when my own doctor supports it 100% & was the one who urged me to apply? Even the department of human resources found me unable to work & listed me as disabled. I just don't understand how they could come to this conclusion. It's unfair & we are fighting it.

I just wish I had better news to report. I am sick of all the gloom & doom that seem to follow us. The only bright spot was seeing my beloved Cardinals win the World Series last night. I got home from the hospital just in time to see the last couple of pitches thrown. I have waited 24 long years to see them win it again & it brought tears to my eyes. It reminds me of a happier time in my life & it was good to feel it, even if it was only briefly.

Joined: 01/03/04
Posts: 37

I have come to accept that this isn't just Ashley's story, it has become a place for me to share everything we cope with. Posting your life story of daily struggles puts a person in a very vulnerable situation. You have a fear in the back of your mind that someone will miss the real you & judge you harshly based on simple words. Still, I feel the need to share the gory details despite those that cannot see the real person behind the words.

I'm feeling so frustrated & down today. I'm not looking for pity here. I really just feel like those around me can't even begin to understand what I endure. It's so important to me to know that they get it but, I somehow fail to convey the broad scope of my illness. I find this to be the case in other places too, with friends IRL & online, even people I come into contact with briefly, they just don't get it.

A diagnosis of Lupus (SLE) is not rare but, running across someone who knows about it is. It floors me that so many people are truly ignorant to how utterly devastating the disease can be. The Lupus Foundation of America states that between 1,400,000 and 2,000,000 people in the United States have been diagnosed with lupus, making Lupus more prevalent than AIDS, sickle-cell anemia, cerebral palsy, multiple sclerosis, and cystic fibrosis combined.

If you said lung cancer or AIDS to any given person, they understand but, Lupus is in a whole different league. Autoimmune disease is the 5th leading killer of women overall but, still, you don't see a lot of people parading down the street or doing PSA's to raise awareness. Maybe I expect too much considering that Lupus is an enigma in the medical community. Not a lot is known about it, in comparison to other diseases. There is not one test that can diagnosis it but, many that are difficult to interpret & the majority of it rests on symptoms. Often times it is missed & irreparable damage is caused. This should be enough to motivate more research but, sadly, it's not.

Much of my frustration stems from people who believe a few pills can fix what ails you. There is no cure for Lupus & current treatments are better than what they used to be but, they still leave SO much to be desired. Often times the side effects from the medications are as bad or worse than the disease. In fact, some have such bad reactions that they are left with very few options. I, Unfortunately, am one of those people. Without the meds, the disease attacks my organs & blood, slowly killing me. With them, I can't function on a minimal level because the side effects are horrid. By taking them, I risk stroke or liver failure, among many other things. Plus, the treatments don't always work & that leaves very few options.

I really can't win with this disease because each & every day *it's always something*. My day starts & ends with pain. Not just in my joints but, also in my muscles & tendons. It affects almost every part of my body. Then there is all the other stuff I have to deal with like frequent headaches, daily exhaustion, memory problems & speech difficulties, swelling, night sweats, fevers, chills, extreme photosensitivity, muscle weakness, hair loss, mouth & nose ulcers, difficulty swallowing, anemia, Thrombocytopenia, vision disturbances, IBS, numbness in hands & feet, tremors, constant sore throat, recurrent infections, pleurisy, shortness of breath, palpitations, fainting, TMJ, insomnia, sciatica, bladder urge/incontinence & weird rashes. On any given day I have at least half those things going on & really bad days, I can have nearly all of them. It's hard for some people to grasp that so many things can happen to one person so, they choose to ignore the reality of chronic disease. It is life altering & devastating. It is a relentless onslaught that I cannot escape from. It's bad enough that I don't even want to live somedays. It is called Lupus.

Then you have the stupid comments like "you seemed fine yesterday" or "you don't look that sick. Sheesh, why not just come forward & call me a liar. The fact of the matter is I only go out on the *very few days* where I'm actually feeling semi-human. If only they could see the battle that rages inside of my body daily. Really, I am very good at hiding it because I'm self conscience & go to great lengths to do so. Then there are the well meaning people that try to offer advice & tell me about some miracle 'cure' they found at the health food store. It's a complete load of hooey. I have been down this road before, trying the natural approach to things. It didn't work. A matter of fact I got sicker. Time to move on.

I woke up in agonizing pain this morning, feeling like death warmed over because I went to 2 doctor appointments yesterday. Simply riding in the car & being examined was enough to cause everything to flare up. Many days it takes less than that. Everything we do is dictated by this disease.... Mom can't walk that far, we have to go without again because we need the money put gas in the car for Nashville appointments or to buy medications, Mom is too sick to do things with us or will doing _______ make things worse... It goes on & on.

As time passes, the disease progresses & news gets worse. I saw the Urologist for the first time yesterday. He went over all my problems & told me straight up that I would need surgery to fix some of it. Other problems can be controlled by medications which he already started me on. And then there is stuff that medications or surgery will not fix.

He is going to use cystoscope (microscopic camera) on Nov 20th to see how much damage has been done since I have multiple things going on. He also want me to referred to a Nephrologist for evaluation because of my recent lab results. My kidney function is faltering & they are worried about what that signals. He also strongly suspects Interstitial Cystitis because it's not uncommon in Lupus patients & my symptoms match it perfectly.

The cherry on the icing is that I have petechiae on my ankles again. I also saw my GP yesterday & he wants me to see my Rhuematologist ASAP (possible ITP problems arising again). If that wasn't enough, my recent LFT's (liver function testing) that came back elevated. He suspects something is going wrong with my liver. This is not anything new though, because he has strongly suspected this before based on labs/symptoms. He just never ran all the needed tests for diagnosis. Honestly, I wouldn't be surprised if I had an AI hepatitis or primary biliary cirrhosis diagnosis in the next month. I am happy, however, that I finally have a good team of doctors working on me.

And all of this is just a day in my life. It doesn't include that my Mom is in the final stages of her cancer, dying. It also doesn't include all the goings on in my day to day life, poor financial situation with bills we can't pay, a car that is on it's last leg, fighting with SSI over benefits we need to survive, a daughter who still is struggling to recover from a broken back, another daughter who doesn't even speak to me, a son who is constantly in trouble at school, another who ramsacks the house knowing I can't stop him, a husband that is overwhelmed with stress & an ex husband who refuses to do his part. And so it goes... I am just trying to keep my head above water here.

Ok, I am off the pity pot for now Lol If you have made it this far, to the bottom of this novella, I thank you for taking the time to read it. It really means a lot that there are people out there who care enough to listen. There are so many things that I really need to get off my chest. I'm sincerely hoping that someday I will have better news to share.

Joined: 01/03/04
Posts: 37

Another rough week has come & went. The newest medication in my line up caused me to have 3 seizures, two mild & one major. I know Plaquenil has helped many people with Lupus but, it's a no go for me. It saddens me because I had set my hopes on getting some relief. Oh well, back to the drawing board.

I also came down with a respiratory infection that has left me unable to breathe. I had to make another trip to the ER for a few breathing treatments. Trips there seem to be a weekly occurrence for me now & the doctors know me by first name. They should just reserve a bed for me. It's funny & frustrating at the same time. I guess Asthma has now been officially added to my long list of medical problems. For some people, I know this would be a major development but, to me, it is just another day in hell.

I have my Urologist appointment tomorrow for the cystoscope procedure. I'm not looking forward to at all because another diagnosis will be added to the ever growing list. My doctor thinks he is pretty sure it's IC (Interstitial Cystitis). I had no clue what it was until I looked it up & now I'm wishing I hadn't. It goes hand in hand with AI disease & is extremely painful & debilitating. I don't know why it bothers me so much since that is already a part of my daily life. I guess I'm fearing that with each new problem, the inevitable outcome will be that I'm permanently bed ridden. I'm not far off from that now though.

It hurts because I used to have a life. None of my sons remember me back when I was healthy & this shell of a person is all they know. Adam came to me & asked what I did when I was younger. I think my answers shocked him. I used to paint & spent many hours doing so. I also used to raise, show & breed horses. It was my life's passion & I really had a gift for it. At the time I got sick, I had just won the state championships & was on my way to national. I used to be outdoors all the time, caring for the many critters we had on our farm. I used to work as a vet tech & devoted my time/money to rescuing animals. In addition, I donated my time to the ARC for disaster services & teaching CPR. I spent many hours at the school helping in my daughter's classes. I had friends, an active social life & happiness. All of which is gone now & it's been gone for so long that I can hardly remember what it was like. It's very hard not to be sad remembering all that I have lost. I am not me anymore.

I have become the disease & I absolutely hate that it dictates everything. I used to be so optimistic, able to handle anything thrown my way. I always managed to keep my sense of humor no matter what. Now I am angry & bitter. I keep wondering what I did to deserve this. I try to defend my life inside my head by remembering all the good I was able to accomplish. Despite being so sick, I continued to donate all my spare time to other causes by building websites (www.Katrinatribute.info & www.commonbonds.info). I thought somehow I could rise above all of this by not focusing on it & giving my energy to people in need. It gave me a sense of self worth again being able to help out in some way but, didn't turn out to me the magic bullet I had hoped. The happiness was very short lived & the disease showed me who was in control. Still, I press on hoping that somehow I will be forgiven for whatever it was I did wrong & this curse will be lifted. I'm struggling to understand but, answers are in short supply. People tell me that no one deserves this but, I still feel like I'm being punished for some unknown, invisible reason. They tell me to turn it over to God but, despite all the praying, I still feel so lost. I feel like I am drowning & no one can see or hear me.

I'm angry at myself for wallowing & letting it get the best of me. I really don't know what else to say right now so, I will write more tomorrow after my appointment.

Joined: 01/03/04
Posts: 37

Sorry, didn't get a chance to update the following day after my last posting. I went to my Aunt's house for Thanksgiving as planned. It was so good to see everyone. Mom continues to amaze me with her strength & determination to live. It turned out to be a rough trip on us all though.

After bending over slightly to get something light out of our car trunk, my back went out. I'm not just talking pain here...I collapsed on the gravel drive crying, unable to stand or walk. My husband had to carry me inside & we had to cut our trip short to get me home ASAP for treatment.

That was the longest drive of my life. Even on pain meds I couldn't get comfortable. DH didn't want to wait until I could be seen on Monday, he took me to the ER Saturday night. They did X-rays, noted that I had Neurological symptoms w/ severe pain & sent me home with mega pain pills & muscle relaxers...with instructions to get an MRI. The diagnosis is Lumbar radiculopathy of unknown origin. I have been using a wheelchair to get around but, some of my mobility is starting to come back.

I went to a pain management clinic for the first time today. They were wonderful. My new doc gave me a thorough exam & noted a great deal of weakness in my left leg, more than my right. He went over my symptoms but, said that they may not be able to give me an exact cause since Lupus does the same type thing & masks other diseases. I have an MRI scheduled Tuesday & they are waiting on the results to decide proper treatment. In the meantime he gave me more mega pain pills & muscle relaxers. I am so relieved that I will finally receive proper treatment instead of being left to suffer.

After my ER visit, my dad called and was frantic. Mom got a virus which led to pneumonia & she was in the hospital in critical but stable condition. My heart sank because I didn't think she would be able to pull out of it. She shocked us all though & is doing much better now. They did scans to see where she is at with the cancer & even had some good news to share. The one in her neck has shrunk a little in response to the Radiation. They want to start her back on Chemo when she is strong enough. This truly is the season of miracles because she shouldn't be here right now. I know that this type of cancer cannot be cured but, she is still here with us & that's all that matters. I know we have some wild angels looking after us but, I thank God that he has blessed us.

My poor dad though caught what Mom had & has been in bed for a week very sick. He has his own health problems & with all the stress going on, really didn't need this. I spoke with Mom last night & she said he was doing a bit better. I don't know what I would do without my father because he had been our rock through it all. Please send much needed thoughts & prayers their way. My parents have been through so much & really deserve a break from it all. I feel so lucky to have had them as my parents & love them with all my heart. It hurts so much to see them go through this life & death struggle. I wish more than anything I could wave a wand & make it go away for them.

Speaking of a season for miracles!!!! ...Ashley will be marching with color guard for the first time since the accident in the Christmas parade. We never thought it would be possible this soon & there certainly was a time when it looked like she may never walk again. It will be a very emotional weekend for us, marked by triumph. Ashley, on the other hand, never lets anything go to her head. She takes it all in stride & never for one moment let her heart believe she wouldn't be able to regain her life back, despite all the medical nay-sayer's. She doesn't see how much of a miracle this is, a true blessing that we are so overjoyed & thankful to have. She also doesn't think she has accomplished anything special but, I keep telling her otherwise. The rest of us know better. I will be sure to post pictures!