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.
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. 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:
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.
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.
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.
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.
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 ****ty, 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.
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.
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 ****ting all over us. I really don't know what else to do with her. I am at a loss.
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.
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.