Struggling

Well, as you all know, my parents are in Kenya right now. They've been gone for almost two weeks. I did pretty well my first week alone, but the second week has been rough. On Tuesday night, I was hurting so badly that not even a second dose of percocet was enough to dull the pain. I didn't get any sleep at all that night. I had plans on Wednesday to go out to lunch with a friend and have another friend over for dinner, but I had to cancel both of them because I was so much in pain. If my parents had been here, I'd have asked them to take me to the ER, but I just didn't have the heart to ask someone else to take me in. It was Tuesday when I really needed it, and both my aunts were busy, so I would have had to ask a friend, and since it takes hours there, getting fluids and generally needing a second dose of morphine and benadryl, since they don't like to give me enough as a first dose, I just couldn't bring myself to ask someone to deal with all that.

I really fell to pieces on Wednesday when talking on the phone with my therapist, but he reminded me that we already knew I was likely to have a difficult time, both physically and emotionally, because I don't deal well with being on my own and when I'm upset, it affects my head.

I did better on Thursday and Friday, but today (Saturday) was another bad day. I'm just so depressed today, as well as hurting. Being on my own reminds me of all my fears of the future when my parents are no longer able to help me out, and I'm just feeling really lonely anyway. Paradoxically, I didn't have the energy to pick up the phone and call someone either. Depression stinks because it makes you want to withdraw at the very time you need people the most!

Last night I talked to my Taiwanese sister, whom I appreciate being able to call in the middle of the night because she's on the other side of the world. But she has no concept at all of what it is like to be in any kind of pain, let alone chronic pain. She doesn't understand why I can't just get up and get a job. Usually talking to her cheers me up, but last night it just made me even more depressed and upset.

If I'm still in bad shape on Monday, I'll have a friend take me into the clinic in Pasadena, where twice a month I can get a morphine shot. I couldn't go last week when I was in such bad shape because my primary doctor, who writes the prescriptions, is out of town, and it took a while to find another doctor who was willing to write the script. I just pick it up from the doctor's nurse and take it to the nurse's clinic, where they pick up the meds from the pharmacy and give it to me. I don't feel so bad about asking someone to take me for that because it is less than an hour in the office. They know me so well that they don't make me wait after getting the shot, even though it's 25 mg of morphine.

Will Thursday, when my parents get back, never come?

I've already started in on next week's bottle of percocet, so I'm likely to be in trouble over the weekend. I just hope my parents are able to take me into the ER over the weekend because I'm likely to be short of meds by then.

Too much to worry over!

Sorry I've been away from the site for the week, but I was just in too much pain to look at the screen. I'm in bad shape now, but desperately needed to write out my feelings, so I'm trying not to look at the monitor as much as possible.

Thank God for all you wonderful friends at Ronda's!

I'm sorry you're struggling so Vicki. It is so hard to have to rely on others.

I've been having issues with the exact OPPOSITE of your problem. To the point I'm having nightmares about it. My youngest son Robert is 21. He is moderately mentally handicapped and autistic due to a rare chromosome disorder. We are trying to come up with living arrangements and plans for Robert for when hubby and I are no longer here to care for him.

So many programs are being cut right now. Our oldest son, who is a special Ed. Teacher, feels Robert should be living more independently now. In addition to having difficulty finding supportive living situations in our rural community, I'm having a great deal of difficulty even considering Robert living in a differeent town from us. I keep having nightmares that Robert has wandered away and drowned and I can't find him. I wake up terrified and stay unsettled the rest of the day.

Sorry for hijacking your post, Vicki!! Just know that while you are concerned about your future, your folks are doubly concerned.

I'll end with a funny from Robert. He thought thatnhis current job would end after the summer and then he would just stay at home all day watching movies. I told him that no, he is an adult and since he can hold down a job he will have to keep working. Robert said "Okay, I'll work the rest of my life, BUT THAT'S IT"

I'm sorry you're having such a rough time, Vicki. When reading your post, I realized I am in a similar situation. Being a bit younger than my husband, the odds are he will leave before me (yes, leave is more comfortable to use than the real word). Since my older son is incommunicado and my younger son is really not capable, I will be completely alone and unable to support myself.

I have step-daughters but only one would be the least bit amenable to having me live with her. She doesn't have the means with which to support me but perhaps if we combined incomes, we could manage. I was just hoping she'd find someone to marry, though (she is divorced).

So, I think I know the anxiety you are feeling. Maybe you could discuss this with your parents. I don't know their financial situation but perhaps they'd be willing to clue you in. Then maybe you would know if they are planning on leaving you a sum of money you could invest and possibly live off of?

I think Leslie gave you great advice. I'm sure your folks have discussed it, if they're anything like hubby and I, they have at great length.

My family has always been very open about estate planning, but I always tease hubby that no one in his family ever dies because they refuse to talk about it.

How comfortable would your folks be discussing it?

Hi Sweetie,
I had a feeling that u were having a rough time after the message you left me.
I really want to call you back, but understand that your sleep schedule is a bit off kilter (like me), so just tell me a good time to call, or call me whenever, and I'm here for you.

I wish I didn't live so far awAy in San Diego. Like Cheryl said, we know and care about each other so much I'd love to be able to help you out when needed.
Love and hugs,
T

Oh Vicky, I am so sorry that you are having a rotten time of it. I wish that there was more I could do to help. I am to far away to do anything physical. But I feel for you and I want so much for you to have a better time this week.

Good luck.

Mary Anne

Vicki - How are you today? Are things any better? I'm glad you have a friend that could take you for the morphine if you need it, but hope you are past the worst of it and don't need the extra painkiller.
Hang in there. I live alone and know how it can be. Like the rest of the world isn't out there at all and you're all alone. Hang in there and remember that there are others like us, just putting one foot in front of the other. - Cathy

Howdy Vicki AND Leslie,

What you both fear the most has happened to me.

My beloved Steve was HIV + and was developing not only horrible problems with side effects, but was also developing various mental conditions that made his life difficult - huge anxiety and great "compulsion" (?) He would stand in front of the stove and absolutely not be able to tell if all the burners were off ... by the time he looked at the last of four knobs, he was back to worrying about the first one.

And you all know about my various challenges.

I have also written a GREAT deal about our love - really there are no words to convey in all its magnificent beauty, the scope and breadth, and depth, and sheer magnitude of our love each for the other - exactly as the other was ... never any desire to change the other - we loved each other in ways unimaginable to me only a few decades ago.

We knew in our hearts of hearts that we could not live without the other. He did not want to live without me around and I did not want to live without him by my side - plus I believed that life would be impossible without him to help me out.

We had stored up the means to make "milkshakes." We understand exactly how many pills were necessary for a lethal overdose. when our problems became too much or one of us died, the plan was the dosage to be placed in a coffee grinder, made into powder, and then mixed with chocolate milk. We had decided it was the rational and loving thing to do - AND the only option available in the event of catastrphe - the death of one of us.

That rainy Sunday afternoon, when I brought Steve water and realized he no longer needed anything ... well, I am not at my best in shocking situations. I do much better with a bit of thought. I do not react well under huge stress.

that afternoon, I forgot about our agreement. I called friends and family, got humiliated by the Sheriff's Department, and was finally tucked into bed alone. So alone. AND I did have the presence of mind to give ALL my pain medication to a neighbor to hold for me.

The next morning I did indeed remember my promise, my final committment to my loved one. I retrieved my pain pills, still in the depths of an agonizing grief that I cannot recall in all its horror ... some memories are best blocked.

BUT a friend was driving the hour down to the airport to get Carey. He was a close friend and suspected Steve and my final promise to one another. And he gave me hell ... he refused to go get my daughter if there were ANY chance that they would arrive at Ravenhurst to find me dead too. He refused, absolutely refused, to be a party in any way shape or form to the tragedy my Carey would face to find both her Dad's dead. He made me swear on all we hold holy to stay alive until my daughter arrived.

And day by day, week by week, my face to face friends watched me and shepherded me and loved me away from suicide.

How have I managed these last two and one half years? there were weeks when I was too ill to prepare food. My home became a disaster - it was Steve who had the physical energy to clean and cook ... not me. I could not drive, I could not speak on the phone, and I lived each moment as though it were a full hour of torture ... torture of the soul. A very dark time. But I lived.

The week after Steve died, my brother - who knew how I was, am - said that I just had to leave Ravenhurst and come live with him and his wife for a while, then live with the second brother's family, then the third family ... move every six months or so in order for the the burden that was my necessary care was shared by all three brothers. Wasn't that loving? I now see it as very loving. But as the time I got my grieving hackles up - and decided to stay in my home. I simply could not imagine my life as a gay man, disabled yes, but still a mature man, in the very straight, very different homes of my brothers and their delightful wives. So I stayed put.

Friends and I had ad nauseum converstions on my guilt in NOT killing myself to be with Steve. I felt that I had let him down in our final and most important committment. I wasn't Juliet, I was Maria ... I lived on.

Not easy. I do NOT want to convey to you that it is easy. It is NOT easy to live another minute when your loved ones AND your vital caretaker leaves you behind. Not easy.

But friends came over and cleaned my home from top to bottom (they love to clean house - how weird is that) When my hunger was known, my freezer filled with casseroles to heat and eat ... again my friends. And a delightful and loving 8 year old girl demanded in her own sweet way that I take her to the theater ... she did not want me to be alone. We now have season tickets to a local company.

My neighbor boy was very willing to earn a few bucks driving me around when I needed it. I learned all about home health aides and started the paperwork

then another miracle happened. My daughter and my son out law decided to move in with me from June to October after Steve died. they loved me through the worst parts ... well most of the worst parts. And my Mom was always there speaking on the phione even when I couldn't. And my friends.

And especially this list. What an absolutely miraculous and phenomenal outpouring of support from all you people. People who seldom if ever posted, contacted me with such love and such support ... just enough love to stay alive for one more day.

2.5 years later and I am OK. making new friends, going out some, enjoying my time at home, enjoying a new roommate and his boyfirend, watching my special kids grow (Ashley had her first day of highschool today!), spending time with old friends and hanging out here.

10 years ago, I earned over $110,000 a year in net salary, car expenses payment, and travel per diem I had the dream job of my lifetime and a marriage worthy of a great novel. then came disability, then came marriage inequality and the loss of all Steve's income ... I am now a (comparably) poor man.

But I do believe I am as happy this day as I was married to Steve ... well, almost.

Life takes us down paths of great pain. And grieving the loss of the love of a lifetime is a great pain - my heart is still heavy to imagine it.

But today, tonight, I am happy to be alive. I think my Steve would be hugely proud that I remain in the home we loved and that I am reaping the benefits of all his loving friendships. Yes I believe Steve would be proud of me and very happy for me.

So Leslie and Vivki, fear loss - grief is huge journey through unbelieveable pain. BUT listen to Cathy, and remember just to put one foot in front of another, today, Let tomorrow take care of itself - it is funny how life does indeed work out if you simply put one foot in front of the other so to speak.

And do NOT grieve or even begin fearing grief for the loss of husband or parents. No indeed. Grief will come, maybe if you are lucky enough to live longer than loved ones. But the time for grief and fear of grief is NOT yet. Not by a long shot. LIVE today and let tomorrow take care of itself.

Grief is not a universal human experience. I know many who have no one to love who loves them back. they will never grieve as I did. But what a huge price that avoidance of pain costs. I am SO glad I loved even when the price of love is unconsolable grief. And I am real happy that both of you know love.

Scarlett O'Hara was wise in only one way ... After all, tomorrow IS another day!

Carpe Diem!

Hi Vicki. Just hang on in there. I hope I haven't added to your stress after my post in another thread here. I know it's hard to remain positive when we are alone and or pain is too much to bear. Thursday will come eventually although I think you will find the strength you need until then. I believe that you are more resourceful than you realise.

I'm lucky in that I am very rarely alone for long on my bad days. My wife doesn't know it but has saved my life more than once. We are really close but I couldn't tell her this. We both hope that the fear we have of being left alone is worse than the actual thing.

Richard, I read your post through twice. I admire you for being able to put your feelings and experience on paper in the way you do. You have so many enviable qualities and skills.

Life gives us many wonderful experiences but is often cruel in equal measure. I often find it difficult to think of the good times when in the midst of the bad. I'm trying to write about my life as an appendix to my family tree research and this is helping to put things in perspective and the photo album that goes with it helps too.

Thank you everyone, especially Richard! I finally made it through the week. My parents come back tomorrow. Yesterday I had a friend take me to get a morphine shot at my primary doctor's clinic. I'm still hurting quite a bit today though. Tomorrow morning my friend will take me to see my headache doctor. She has been a blessing, as she has called almost every day to check on me. She is out of work and looking hard, but right now it has been hard to find a job. My dad asked me to keep track of everything she does for me because he wants to compensate her for all she has done, but she is really resistant to accepting any money. She says that other people in the church have blessed her a lot and helped out with her finances and taking care of her 11-year-old daughter. So she is happy to do something to help me.

I have also really been helped by my last roommate. She is studying in England at the University of Kent, and we are still close. We have text message conversations. She got a thing through google where her British phone is connected to a U.S. phone number that I can text, and it redirects the text to her British phone. So we have text conversations throughout the day and night. It has been especially good for me because that means that during the middle of the night I can message her, and she'll be up. She has done a lot to keep me sane.

So I do have people to be thankful for. You people are certainly high on the list. In fact, when I was off Ronda's for a while earlier this year because looking at the monitor was bothering me a lot (and I think I was just depressed and felt like withdrawing too), my dad noticed a difference in me and actually told me several times to get back to Ronda's because he could see that it did me good. He even suggested that I could get my mom to read the posts to me if I didn't feel like looking at the screen, but I decided it's better to just deal with the screen on my own.

As for finances, my dad had a very good job with the city, so they'll have money to leave me. I was surprised to learn recently that by the time he retired, he made over $200,000! He was in charge of all water for the city of Los Angeles. The other day, my mom was recounting all the charities that she supports, either historical or in support of animals, and I made the comment that they must get a large tax deduction. My mom said that they do, but it's mostly through my dad's giving. They give over $80,000 a year to charitable causes!

Plus, my dad donates a lot of time to church stuff that he could have made a lot of money doing. He oversees the personnel at the church, and he also runs the Kenya ministry for free. Where most relief groups take money for overheard causes, often at least 20% or more, my dad donates all of his work, so 100% of the money given goes directly to Kenya. In addition, he is chair of the board of the relief agency that our church works with. They administer the project that my dad has set up.

That job has caused a lot of stress to my dad because the woman who founded the agency is now in her 80s and, in my opinion, has some sort of mental illness because this absolutely wonderful, amazing woman has become paranoid that they are going to "steal" her ministry and mess it up, so she is constantly fighting everyone and firing people, although she genuinely seems to think that they quit on their own. She has tried to force my dad out several times, as she did the previous directors of the board, but he has refused to go because he sees that the ministry needs him right now. And because the U.S. board really doesn't have any real power in Kenya, he can't fire her. The Kenyan board, which is the one with the authority, consists of three people: the missionary, her adopted Kenyan son, and one other man. The woman has even forbade the people in Kenya to have any communication with my dad at all, so they have had to go behind her back to email him. And I genuinely believe that this is the result of a mental illness, not her true self, because of the kind of person she used to be. It's so sad.

Anyway, it's late now. One of my international student friends, the one I am closest with, called me on Skype, and we talked for over two hours! She has been checking on me every few days while my parents have been away. So I have had people who care about me looking in on me. I just have a tendency to feel like a burden on others when I seem to take so much without being able to give back equally. Last week, I was so very badly hurting, but I just didn't have the heart to ask anyone to take me to the ER, since my primary doctor was out of town, and it took me time to get someone else to write my standing morphine script. The ER requires so much time to be there that I didn't want to make anyone have to spend it. I would have asked either of my aunts if they had been available, but they were both working that day. And I didn't want to be a burden on other friends.

Thanks for your support, once again!

Vicki - In the future if you need to be taken to the ER, why not have a friend just drop you off and then pick you up later. That is what I have had to do in the past. I didn't want them to have to wait around for who knows how long. I'm sure they wouldn't mind that. I would certainly do that for anybody.

Ditto Estree...I have had hubby drop me off and then call to pick me up. But, we only live 10 minutes from the hospital so it's easier to do that. I don't think anything is just 10 minutes away in LA is it?

That would be nice to have someone drop me off and pick me up at the ER, but for two problems. First, it's 20-30 minutes away in good traffic, much longer in bad. But also, they refuse to give me any narcotics unless they can see the person who will be driving me. One time my dad went to fill some prescriptions in the pharmacy, and the nurse insisted on waiting until she could see him in person, not even talk to him on the phone, before she would give the narcotics to me. And once I get them, it's at least an hour's wait before they'll send me home because they always want to give me fluids. So that's not the best option.

Richard,

your story reminds me of a movie I have recently seen; "A single man" by Tom Ford starring Colin Firth. Who I have to say gets better and better with age. It also had the wonderful Julianne Moore in it, one of my all time favorite actresses. I just love her red haired beauty, class and sophistication.

The movie was a visual feast with a wonderfully moving score and had me in tears from start to finish.

Love,

P.