Fiera Fights Back

Sunday
Sometimes I come here because it is one of the ways in which I can have a chance to collect myself and process thoughts and feelings. The day to day chaos and stress is manifesting in so many ways now. Transport day was hectic and long and I had to ask first shift people to stay and help since second shift volunteers were sparse. We had so e cancellations. A newer girl ended up driving a long distance to help the entire day, bless her, Abby. The next morning skeptical foster placement to begin with went south when the dog lunged after another dog on the street. Last I knew the dog had been picked up and back to Bill's house on a temporary basis then I heard at the brew thing that he was at A's grooming kennel until an emergency foster could be found. Chaos, Stress.

I did have a nice visit with Magpie and her hubby at the brew thing. She invited me to sit with them which was great, Pixie joined later.

I guess I am too worn out to turn this into a documentary of the past few days. My dad is having leg pain and struggling to do any PT. He is scheduled to come home in 6 days. We are very worried about being able to care for him. If we can't there is a short window to get him into a regular SNF with rehab but I am worried that will be ore of the same with a step down in care. Decisions need to be made, soon.

Peaches is not much help. She is confused and exhausted and her short term memory is getting worse. I will ask her again today if she has told he daughter about her diagnosis. I can't be worried about her too or relying upon her for help she is not going to be able to handle. We went to breakfast this morning and she seems a bit more understanding that life as we knew it may be over and we may be moving into a nursing phase. And one which may continue on for years, as my Dad's been ready to give up over and over and yet manages to rebound and hang on. I told Peaches that there are two things Dad is afraid of...pain, and dying, And he is MORE afraid of dying, I think. So I expect this will continue to be a lengthy life phase.

I feel some fear myself, for different reasons. Some of my closest friendships have ended in the last few years. Increasingly, my life has been about enabling my Dad's or caretaking. Now I am even comsidering moving to be closer to help them. The scene is dwindling, and I have drifted from things which gave me joy and I clearly cannot live an hour away and be here all the time...and in the meantime we are dealing every day with the uncertainty - knowing that even if he gets past this challenge, it is only a matter of time. I always thought he would have a heart attack but it seems like when you have his combination of issues, you are doomed to a long slow miserable decline.

And, so, where will I be? Where will I be? Will I be his nurse caretaker? Will i become fully adrift? Will I love and respect myself enough to say "this is not OK, we need to lock up the valuables and get some caretakers in here? A resounding yes. Because I have already dedicated months of my time, I have bent my schedule and ola s around theirs for years. i have neglected Irish Friend, I have neglected myself. I need nails and hair done, Weight loss and exercise. Detox time, nature time, social time.

I though I would come here and start bawling. There is so much emotion bottled up right now. I need the Universe to guide me and I need to meditate in order to find that guidance. So I guess I will sign off and do that now.
 
One silly bright spot...we have had lots of rain and between the fresh mow and the weed and feed/aeration, along with the very tall irises blooming, the yard looked great Thursday. I even received unexpected compliments.
 
Tuesday

Today's Bright Spot:
1.5 hour, 1.5m guided walk in OSFP. Achieved in guided group what I would not have on my own: observing and really seeing...from cicadas to snakes, from true original columbine to native parsnip, from hickory trees to oak trees. "Ephemeral wetlands" deep in the woods, where salamanders and tadpoles are to be found. A bit of history of the land as well. It really was perfect and I was able to get away for the 2.5 hours total without being needed or missed. And hit 10K steps!

Contrasted with the rest of the day, which was a relentless nonstop multitasking challenge where I had too many mental tabs open and spend too much time trying to find things like a wheelchair ramp under the gun, talk to docs and administrators and caregiver agency and Peaches and have initial catheter care training, etc.

Still, the way forward is becoming clearer and for now I am essentially planning to stay here for 2 full weeks and then we will see. Peaches is refusing a scheduled regular caregiver and yet when I asked her to commit to start interviewing people with flexible schedules with me she didn't say anything, Yet she is,doing the same thing as last year, asking me for my schedule for the next two months, which I don't have yet because I am going through this crisis. I don't know. She apprears to have this objection to getting a caregiver and wanting me to be the only backup plan. This is not fair to me.

I think she is still coming to terms with all this, Maybe she is even manifesting some effects of the TIA's. She is spending some good time with my Dad every day, but usually goes home after 4 or 6 hours. She does grocery shopping, laundry, walks the dog. When I come home she is watching tv. She seems checked out of most things; when I asked today if she wanted to research wheelchairs while I dug into ramp options, she demurred; just order something. Really? Some are reimbursed, some are not, Some have leg extenders some don't. Some are just transport chairs and are lighter, but then Dad balked at that and wanted one he could operate himself. Later on while watching tv she made a commment that she wants DadAnd to use a wheelchair as little as possible. Well, duh, that is what I want to. It doesn't negate the need to figure out the short run needs and get one.

At some point I need to think about boundaries. She doesn't get to be the only on who chooses when I come and whether a caregiver is used to supplement when she wants to do things, She SHOULD do things, She just needs to cooperate with me in finding a couple of trusted people to stay with him. And this is moot if we get him walking again.

I was pretty upset when I looked in his mouth the other day and saw teeth which clearly were severly decayed around crowns. I said something to her, and her answer was "I know". If she was looking after his care, and he was refusing to,go, why didn't she tell me? I know maybe he refused to go, or it just wasn't a priority, but it has to be really bad for his health to have that mess going on in his mouth. My goal is to get him at least brushing and rinsing to reduce mouth bacteria.
 
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Weds

Bright Spot: It's early yet. Sufficient sleep; Peaches taking the early shift (though I will get there by 9 anyway). Still nice to not be running out door so quickly. (ETA Bonus! His first PT is at 10 today so I get a bit more time to collect myself.)

I am a bit frustrated by her checked out mental state at times. I feel it is importfant and respectful not make decisions which will impact her life without consulting her. But it seems to be too much for her to discuss things like the type of wheelchair to get. It is all around whether to get a lighter transport chair or a heavier one with the wheels and elevated leg rests. There is a strategy around whether or not we enable him to use a chair around the house....not the strategy right now, but what if it is really in his best interest? Will we be shopping for one inside of a week? And then of course there is the money involved, and needing to better understand his cash flows. I also woke up this morning thinking about the hemoglobin deficit and feeling like the docs are not really addressing; it stayed the same over the past week and it is well into the anemic range..I brought up to her that I woke up at 5 and thought about running over to catch the doc and physically couldn't do it...so if she sees one of the docs could she asked them about it? It's like it my question bounced right off her and went into the ether? In fact the only comment she really made was that 'he'd better not get used to using that wheelchair; I want him using it as little as possible". So she is in favor of the transport chair and I will try to get my dad to go along with that at least initially...frankly I am concerned that he is just not strong enough yet.

And trying to manage my own personal situation as well; meet w financial guys, and the roofer who is supposed to come during the next 2 days.

Weight when I was home Tues AM was 189.0. Grabbing all this food on the run is bad. I am losing muscle tone and gaining fat so the scale is not telling the full story.

I did have an awesome burger and stout at the microbrew near my house o day afternoon. But it has been drive thrus and coffee shop most of the last month. By rights I should be (and I look) 200 pounds.

Well, started today with microwave oatmeal. I'll be ravenous for protein/eggs in about an hour. But will be too busy to eat.
 
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Today was overall a really cruddy day. Dad struggled and was very weak; huge step back and unable to stand or transfer reliably. The plans to bring him home Sat are now terrifying us. How will we take care of him and get him to his doc appts? It seemed to finally register w Peaches, even tho she still refuses caregiver helo.

They took a chest x-ray after detecting wheezing in his chest but it came back ok. They are looking at blood labs now. I fear things are at a critical juncture. He was super tired from no naps today. He screamed sweariing at me in pain when I had him do only 5 easy repsto stretch knees and then put the usual pillow under his feet and compression stockings on. When I left I felt like he was manifesting symptoms of C02 buildup/sleep apnea again...talking and groaning in his sleep. Also saying nonsensical things.

Bright Spots: Finally found the transport chair we need in a local shop. And got cushion to fit. Cancelled order of a less desired chair in time. He needed a certain size/type. Hopefully we can test it tomorrow if he bounces back. Also, the ramp arrived.

I found the chair so quickly and unexpectedly on my dinner break that I had time to drive to V and got dinner at Uncle's Mexican. Fresca Salad with jumbo grilled shrimp and a skinny margarita. That was really enjoyable and well deserved.

Dad's hockey team won, which he was semi cognizant of.

Proggy was a good support. Sat on the front porch after getting home from Dad, venting my spleen about today,

I surprisingly found out from an Alix comment that Patsy=Pat C!

Finally bought a bottle of chardonnay and am unwinding with it.
 
Thursday:
Bright Spots
Ramp set up (still needs security pins drilled into deck)
After a miserable and concerning start Dad pushed and got up nearly a full size step. Also got in the car (practice) pretty decently.
Knocked out next meeting with Old Fin advisor I am likely going back to
Pretty on top supplies we will need

Crud: No answers yet on why he crashed so hard yesterday and struggled in early OT this morning. Severe tiredness, cognitive difficulty, He is not walking far and PT says he is using his arms a ton. Angry that Team update from PT basically says he is self limiting and makes zero mention of his health conditions. The person who wrote it up is a sub.
 
Saturday
Bright spots:
Dad home today. Nice Wx. Rubber ramps due yesterday arrived this eve and made a huge improvement getting home over the threshold into the house. Peaches accepted the "dinger" emergency button in case my dad urgently needs help at night. So we can try to get to sleep.

Peaches' daughter andbf had a BBQ, Ir was OK. Long drive. My dad went to lunch and then BBQ. Of course it was too much. We are all very tired and sore.
 
Sunday

Day just started. Peaches took a walk with dog and dad is napping so...processing time for me.

Except I'm too tired. Was awake late and up many times checking on Dad. Primarily because he sat upsideways on his hosp bed to watch tv around 1AM after already being bedded down around 11. His balance is not great and I was concerned he would fall trying to lay back down. He is still carring a big round belly which makes it impossible for him to bend at the waist.

He is not walking more than 8-10 steps generally. This afternoon when he is more awake we will try more.

Last night Peaches did something which really ticked me off. Maybe she was retaliating at my Dad, maybe she was just too tired to move. We got home in time to watch the end of the hockey game. I took my Dad in to the bathroom, took care of his needs and cleaning, and she helped get him settled on couch and I helped him get the streaming going and sat down in the recliner to watch. She sat in her recliner to watch also - we all cheer for the team. Shortly, with less than 5 minutes left in a competitive playoff game she remembered she needed to call her SIL (an important call, 2 yrs death anniversary). She announces she needs to make this call and rather than getting up and going into the bedroom, she dials it on speaker and my Dad turns the volume quiter. So now she is bellowing her end of the telecon over the hockey announcer and if there is something that grates on my nerves, it is competing audio input.

WHO would be this discourteous? It felt like a dominance play. Or revenge because we left her family BBQ earlier than hoped due to my Dad needing to make a BM. I was ticked. It felt passive aggressive or at least downright RUDE. She has been doing this to him for years, and all I can do is ask him whether it bothers him. And it is her home so I don't feel like I get to set the rules, but geez....

Anyway we were all tired and like a number of other things I let it slide for now. But spending time with her crass, gossipy brood yesterday was a reminder that she is pragmatic and in this for the security as much as the relationship.

She seems to not want any involvement inthe catheter care,but happy to do things which are baseline and help steady him with walker, wheelchair etc. If we are lucky the catheter comes out this week and that will help.

Sleepy...
 
7:30PM. Did not really rest today; had a nice lunch at BB (place near W- store) and texted MM, the formerly ponytailed brother of L's best friend B. He is frequently in this area on the weekends for boating and bar hopping.

A tornado warned storm blew through. Thankfully we did not get the hail here as there was no place to shelter my car.

I have been tired all day. I picked up groceries around lunch time and cooked dinner, Got my Dad's bank accounts to tie to Qjicken. Found some fraudulent charges on his credit card starting in November and disputed those and got a new card issued. Still need to get to the bottom of a brokerage account which does not match.

Am physically pushing my boundaries and mentally/emotinally feeling drained. I can't get him to get up to walk 1/2 the kitchen in exchange for the ice cream bar he wants. Or get him to transfer to the car to take a ride to get soft serve. I know he has been tired and sleeping all day. Peaches and Dad have been watching a Ystone marathon for 6hours. I finally came in to the bedroom to get a break from it.

Only I can decide what my boundaries are. I have poured myself into this because Peaches doesn't want to hire a caregiver and we are both hoping he would continue to progress. But he isn't and at times doesn't even complete a transfer, just dives himself into the chair. On the one hand a like a bit of physically challenging work. On the other hand, I can feel minor strains and am too weak to really support him. Pushing his chair is even difficult and takes a lot of effort...plus
positioning it, and the walker, and the urine bag, and cleaning his foley site, etc etc...what are the boundaries and limits? And do I *not* want to go home so badly that I am using this as an excuse?

Am not communicating much with Proggy. We both have major issues right now.

Eyes shutting.
 
Monday

I got better sleep. Probably 8 hours total with one short break. Still, kind of worn out overall.

May go to a movie today. I don't really feel like it but it will keep Dad on a recovery trajectory. This morning we got him over to the bench in the kitchen. Then we offered him the dove bar he has been asking for if he walked to the fridge. He pushed himself and made it. This is with light assist/guarding/chair follow. Getting off the bench or other lower chairs/recliner he needs substantially more help. He will try getting on his motorized scooter ar the theater. If not, transport chair it is.

He will need a washing up before we go to the urologist tomorrow. I can hardly wait. I just don't have the stamina for all this. In fact, I almost just dozed off.

In addition to AN resurfacing last week with a link to some somatic therapy workshops, now W has just contacted me after 5 years. More unexpected that AN. It is just Spring? Anyway....I don't know all the deets but W and his fiancé split maybe 6 months ago, he lost his 5 years' sobriety, and now he writes me to say that he is currently practicing ethical non-monogamy and has 1 partner and he thought we were great together and is there ever a chance there might be something between us ever again? Oh, and the email was sent at midnight in the middle of a 3 day holiday weekend. I don't care if it is something he thought about for some time before he "made a decision" to reach out to me. The optics are terrible. And he seems to have forgotten that while I was Ok with seeing multiple people myself, I wasn't able to tolerate the situation where he could. We were in separate cities and my bio clock was running out and his sober clock was just getting started so I could not ask him to be exclusive; I knew he wanted to have kids and that by the time he was ready, it would be too late for me. Same old sad story we always had, But he is 41 now and NOT too old to meet the right someone again. Sigh. If I wasn't so fat right now would I at least have the balls to suggest we get together some time and have lunch/catch up. I've no interest in getting involved with him, poly or otherwise. I don't have the emotional bandwidth. I do wonder how his mom are family are doing though.
 
Saturday

Finally made it home for an afternoon. Needed to pick up everything from vitamins and meds to mail to razor blades. Taught Peaches how to cath Dad and she is starting to catch on. She is very rough with him though. I emphasized gentleness to her this morning and I will see what the report is when I get back.

Eating has been not good. We are just having survival meals, trying to avoid salt. But it is not enough food and I end up needing something more and running quickly to the gas station for Doritos or something and stuffing it in my mouth in the car. Peaches says she isn't hungry at mealtime and food portions are small. She herself eats things on the sly. My Dad has been ending up with low blood sugar and then gets pack of Belv crackers and oj; so much for being healthy.

Am sure we can adjust but right now not a lot of time for planning or shopping. Their nearest food store is about 15 mins away. Actually Peaches has more time than I do, she takes the dog for a walk, she went out to lunch and bingo Thurs, So now I am taking a short turn.

The emergency alarm has been used a few times. Sleep is not good. Mon night at 4AM he had low blood sugar in the night/ it was 2nd time overnight and he had no more cookies. Weds he slid off the bed at 1:30AM - which I heard his efforts to get up - and I had to call 911 to get help to get him off the living room floor. Last night it was urgency to pee at 5AM this morning with no bottle near the bed - made 300 and then got him to the bathroom to empty out the rest.

Yesterday the planned group rest between 3:30 and 5 was consumed trying to get selected catheters prescribed, ordered, and approved by insurance. It's always something. I ordered wipes to make bathroom cleaning easier; working on technique to keep dad clean and dry and reduce accidents, laundry, and brief changes.

I came home and got most things done while chatting w Proggy. Then ordered sushi and fried rice and my eyes keep shutting. I don't want to nap away my only free time. I need a hair color so badly. It's raining and dak and maybe I'll just lay down for "a bit".

It is nice to be home...in spite of its issues.
 
Monday Evenng

In spite of my general willingness to be here, I feel strained and exhausted tonight. Dad just threw his walker across the floor in protest when I went to get him up for his final catheterization of the evening. He has been uncomfortsble all evening. I tried to get him to walk to the bathroom and he wanted to rode in the chair. I cannot know how he feels, and it really doesn't matter how much of it is mindset. The constant negativity in the household is wearing. We went to a waterfront place for dinner and that was OK. I said to Peaches that I wanted to understand and air out what was bothering her this morning....she was confused about where a store was located and then ran over a curb with Dad's nice newish SUV, a decent clip...scratching rims and maybe even denting them. I knew she was upset with herself but also with me for saying we should have the alignment and rims checked over. She spent most of the day sulking and not talking, not speaking unless directly spoken to and skipping lunch altogether. ("I'm not hungry"). Not, "No, thanks, Fiera, I'm nit hungry". There is more bubbling under most likely, but at least we seemed to air it out a little.

In any event, as I pushed my Dad down the hallway to the bathroom and then cathed him, and pushed him back, I was really ready to be done with the circus, I am done with him not walking/doing his rehab homework except a bare minimum. I am done with pushing a heavy chair through carpeting when he doesn't feel up to it, We have tried really hard to discourage him relying on a scooter or wheelchair full time. But I feel really close to throwing in the towel, ripping out the carpets or letting him us the scooter.

This is the same guy who complains every morning about the scale and then snacks on cookies which are to hand for blood sugar purposes only. I feel bad for him of course, I share so many of his personality traits too, and it is a reminder of the worst of myself when I see him in action.

Also, Peaches no longer gets to make the decision (or I should say avoid the decision) about my role. For one, she is exhibiting signs of early dementia. Second, she has been avoidant on planning and making good decisions, She is goimd to want things to stay status quo because any other arrangement is far less lucrative financially. And no doubt, she feels like she has earned the right to stay. But things are goi g to have to evolve soon.
 
Weds

On what should have been a quiet morning (finally) with Peaches blissfully away at a doc appt, Dad came down with a bleed of unknown origin. We have to wait til the doc office opens and not sure whether uro or kidney since diuretic was increased last night. I am not panicked but I will be if it is not dramatically better in a few hours. And the hypervigilance feels like I "must", it is "my duty" to work the phones early and often until direction is received. Yet it is not a 911. So have left him to nap in recliner while I come journal in the bedroom.

I have moments where I feel like I am not going to get to go back home. Dad is not making enough progress. Peaches is starting to want me to take the lead on his medical stuff. It is super time consuming. I never get enough sleep because we cath him at 10P and 6A and I never fall asleep right away. Plus I have to do so much for him before my eyes are even open. I got on the caregiver forums for support and feedback and I see how tired some of THOSE people are and I guess I am grateful I am not dealing with this on my own.

***************

We ended up talking with both the kidney doc and the uro. Then went to uro for a urine test and a script for a kidney u/s. Meantime, he is bleeding and feeling like he has to pee and then can't. It has been a mess and it has been all day. Then he and Peaches had to drive 20 miles to get gas and have early dinner and so Peaches could check a different store for her ice cream bars.

We got home and it was more Dad, more bleeding, more feeling like having to pee then being unable...then a constant stream of "I need the remote" "Can you bring my tea over here...a bunch of things I was already doing to get him situated so I could return Proggy's hours' old text..finally I just had to say please Dad, I just need 60 seconds of silence. He was quiet for 15. It is all Dad all the time. It would be one thing to be a nurse and have a shift and be able to leave. It is entirely another to be on call 24/7. I was feeling like we were getting a hang of this yesterday and the bleeding stuff started at 6:30AM. It's now 6:30PM and his hockey team is playing,

Well, I just had to got out to him yelling and not being able to pee.
Packing a kit as I think this night is going to end in the hospital.
 
Monday

Today Dad's crown fell out.

It was a suitable event at a suitable time to evoke a little humor to mask how utterly hopeless the situation is becoming. I found it on the hospital tray. Thank goodness he did not swallow or choke on it. He was utterly unaware.

So Dad did go to hospital during game #3 of the hockey playoffs, Gross hematuria they called it. Tons of clots in his bladder, ultimately clogging his foley and causing severe pain. It took nearly 24 hours from arrival at the ER to get into a room at 7PM Thursday. Thursday night we were up all night again as the Clot Squad could not get things to stay flowing even on continuous bladder irrigation and had to page the on call doc in the middle of the night. They put in a 22FR and kept pulling out clots until the last blockage at 7:30AM.

It's not clear what caused the bleed to start.

I've been here almost full time. I went home (to Dad's) a couple of times to shower and change, I went to the city to pick up mail and package and spent the few hours crashed out. I felt like things were good yesterday so I did not stay overnight and he apparently took his bipap off so often that they just gave up. He was fuzzy and crotchety today. It's exhausting. Still, I advocated for him. To get him sitting up in preparation to get out of bed. To get put back on a real diet. To NOT get an unnecessary shoulder Xray or dysphasia test. To get a clean gown. Etc. etc.

Getting sleepy so going to lay down.
 
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Dad moved to rehab hosp Weds around 6:30. Stayed til midnight getting him settled in, meds checked out, making sure his bipap was setup and nursing staff knew to check OK from time to time etc...He did well Thurs in PT so he has not lost everything, but he does have a ways to go.

I don't have time, and don't care really, to detail how exhausting, disorienting, and strange the time spent has been. Today I was glad to sleep in finally, and to take a morning to catch up on things while Peaches is over with Dad. I am bringing the dog to visit at 2 so about to jump in shower.

I was triggered by an email from our civic group urging people to vote for a project I oppose to repurpose an old basketball court at the park down the street. I was really upset that we had no internal vote or voice and the President just sort of took license. Kindof feeling generally disappointed with people and detached from any joy de vivre right now.
 
Saturday

I collapsed into bed around 8:30 and got up around 7:30. Finally caught up a bit.

Feeling peeved at Peaches for no particular reason, other than nagging "are you going to go do something for yourself today?" Unlike her, I have been spending almost every second of the day at hospital and rehab, staying on top of his medical progress, meds etc; she spends the bulk of her days at home watching tv, walking her dog, shopping and occasionally going to play bingo with her friends. Now that dad is stable and rehab seems to be generally doing what they should (and his 02 seems stable) I am getting rest. No, Peaches, I have not planned what I am doing today, it is my day to finally rest and do things as they come.

That being said, since Proggy is not coming out I may drive back to the city and check on my house, flip on the A/C, grab my mail, and color my hair. Maybe take a walk in the woods. Thank goodness she left at 8:30 to go see my Dad. I get a quiet house with no television and some space to decompress during my coffee.

I am still feeling misanthropic, as though people just really aren't worth the effort. But I think it is because I have not had the alone time I need to charge my batteries.

*********
About Food

I have continued to eat grab and go food and snacks. The hospital I would hoard food and snacks because nothing was open overnight. I would end up eati;g the provisional food by 10PM. Hummus and pretzel chips, a banana, one time a big cookie. Add to that 3 full sized companion meals per day and whomp whompI have tacked on more pounds. Today is the turning point as I will get a new SW and also go for a little hike. I need to just get started.

I can't believe how big I am and yet I have been here once before...when I allow myself to become a human DOING instead of a human BEING, this is the result.

The older I get the more difficult it becomes to start moving again after a period of dormancy. I cannot afford to lose myself in this quest to "save" my Dad. Indeed, my weight gain and binge eating are not the example want to be setting. We need to find a way to get healthy food simply and quickly, and eat reasonable portions.

I don't expect to be perfect. I expect myself to start trying and caring again.

Not because of society or people. But for myself. To feel better in my own skin again. To feel more connected to my humanity and sexuality, and to fit into my cloathes without sizing up AGAIN.
 
Went home so I could color my hair (it has been at least 3 months). Nothing important in the mail; message on the answering machine from the grant app people asking me to submit a copy of ,y entire tax return, which I have heretofore refused to do as it contains information to which they are not entitled AND they will keepit on a server for 7 years.

Anyhow.

Hair done. New SW 190.4. I look shocking and don't want to be seen by anyone who knows me. Or anyone who doesn't for that matter. It is absolutely impacting my decisions around going out and seeing people.The fourth of July is only a couple of weeks away. Will I skip it so that they don't see me like this? At what weight/fitness level do I think I will find myself suitable to be amongst people who know me? 167?

How long will that take even with exercise?

If it wasn't easy to curb eating a lose weight the last few years, what if anything makes this time any different?

These are the questions I need to sit with.
 
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