There is a lady in my church who has had a vision for me or of me….speaking to crowds.  While that is flattering, it is also terrifying and completely unappealing.  I would rather write at my own pace, when the spirit moves me, to a faceless audience online…and when someone steps out from the crowd and reaches out to me…it delights me and fills me with a sense of purpose….of calling.   Recently that has happened to me and while she is younger than I, we have rapidly become better than friends. We are soul mates. There are SO MANY similarities in our stories and in our interests and backgrounds that it is amazing. It is GOD.

Anyway.  That’s the kind of fame I have and the kind of fame I want.

My mom died two years ago in October.

I know that is  a random statement and very badly placed.  But I was just struck once again, by that sense of loss that has been my nemesis for the past two years. I KNOW it’s been two years…and shouldn’t I really have had the understanding by now, that she is gone and I will not see her until i’m in Heaven ? There are so many things I wish I’d talked to her about.  Things she could have explained to me.  Things I wanted to apologize for.  Things I wish I knew about her.   A person leaves, carried by the angels away, out of our lives forever; and there is  a great tear in the fabric of our lives where their life was woven into ours and was pulled away leaving  a gaping hole.  It must be patched.  And we must accept–even if we are not satisfied–that the patch is our reality now and it is all we have and all we will have until these bodies are resurrected once and for all.

My Dad has his patch…and has moved on.   I have not yet gotten rid of the rent in the fabric of my life.  I don’t know what that patch will look like for me.  Maybe it is the comfort of God.  Maybe I will not have another person to fit the bill but maybe just an understanding with God that this must be as it is….and I’d best accept his Peace offering and move on.  A person cannot live in the hole left by a bomb which was dropped on their house.  They must rebuild or move on.  So, too, must I.

And I will end here….for now….because for this moment, that is all i have to say.

I know I am posting really erratically ….really infrequently. I sometimes consider ending the blog once and for all but really, I am attached to it.  And it is nice to have a place to write where family will not pry into.  It gives me the ability to write freely; uncensored.

On July 6th I had a major surgery on my left ankle.  I have Psoriatic Arthritis  (PsA) which is a relatively rare disease that is similar to Rheumatoid Arthritis.  I’ve had both hips replaced (my left one six times), my right shoulder replaced (the left one needs to be done as it is bone on bone, and now my left ankle is fused.  The right one also needs to be done however this has been so difficult and long of a recovery –without a guarantee of lessening the pain I’m in, that I am loathe to go through it again.  My ankle joints are destroyed by the PsA. My elbows, wrists, hands and spine are also rapidly worsening despite the plethora of biologic medications that the doctors have tried me on.  After Stelara (which I am now taking) there is only one more possible drug for me to try….and the meds only work for limited time….eventually there is a need to try a different one.

Anyway.

I had my surgery and then went into a nursing home/rehab facility for 60 days. Then, since I’ve been home I have been largely house bound, only  going out for essential MD appointments.  My deck has six steep stairs which I’ve been unable to navigate and have had to call the fire dept. to come and assist me up the stairs.  I should be in my wheelchair now, however my house is too small; doorways and hallways too narrow for that.  So instead I’m on a knee walker which is similar to a scooter except you kneel on it with your bad leg and propel yourself with the other.  I HATE this thing.  Yes it has helped me to stay off my feet, but it has REALLY hampered my mobility and the accessibility of my belongings and activities.  It makes me short of breath and it takes all my strength to get from my bedroom to the kitchen and back (with a rest in between).

My husband has alternated between being helpful and being just downright mean.  Just when I think I hate him he will do something sweet and I forgive him. My case manager is really pushing for me to find alternate living arrangements–without him.  Seems like for my whole marriage people have been trying to talk me into leaving. Maybe someday I will have the courage to do that.  The waiting list for apartments for disabled people is a couple of years long, as is the list for housing funding.  And there is the question of whether or not I’m able to manage by myself in an apartment.  I would definitely need an aide which will be available to me while on medicare and Medicaid.  So that would probably work out to be less of a strain than it is for me to live here with only sporadic help by family.

I’m sorry –this post has been a housekeeping article, getting you up to speed about my circumstances….it has little depth or insight or pondering.  I will try to come back maybe tomorrow …and write some more.

Vaya con dios.

Thursday I had “words” with my husband because I dared to ask him for a ride to a  surgeon so that I could get treated for my ankles, which are bone on bone and so painful that  I am loathe to even walk to the  kitchen.  I need to have them fused—but that can’t happen until I get to the surgeon’s office.  None of my friends have responded to my pleas for help.  So I summoned my courage and asked my husband.

Well.

The floodgates of ire and resentment opened and he finished up by saying that I belong in Assisted Living.  He has said this to me many times–but this time I wondered: ‘Is he right?’  Fast forward to Friday.  I went to visit my mom in the nursing facility where she is currently following a close encounter with death and months in the hospital.  My mom told me during that visit that I need to be in Assisted Living because no one in my family will take care of me.  And while that is true, a deep dark gloom settled over me.

Part of my feelings were fear because I know that there is no way for us to afford this and there is no way for me to get government funding (like Medicaid) is for my husband and I to divorce–and while that makes him do the “Happy Dance,” it is a deep, deep sadness to me.

So on Saturday morning I went online to research what kind of facilities are out there.  It was kind of  dead end…except I found a checklist to determine whether or not it is “time” to go to a nursing home or assisted living.  I can’t find the one now that I was looking at but below are similar checklists…I found something like 9 out of 10 of the categories I “failed”…This was an eyeopener and quite scary.   I put my phone number down and almost immediately, (early Saturday morning) I received two calls.  One of the organizations said they could not help me because I’m under 55.  The other one asked me how I would feel to be living around elderly people.  But this lady did email me a great informative link to determine expenses and what kind of help is available from gov’t and private sources.  And there was something else in there about people under 55.

After all this a thick dark gloom fell on me. I went through the day heavy with the knowledge a my life is going to change–and not in a manner I would choose.  And also came the realization that this is not going to be an instant or easy transition.  There’s divorce, applying for gov’t medical benefits, going through my home and deciding what to keep and what to leave and what to get rid of.,  setting up funding and finally choosing and applying to a facility.

And my response? The ostrich stuck his head back in the sand and I pulled the covers up over my head and pretended that nothing has changed.

Here are some of the checklists:

https://www.caring.com/articles/signs-its-time-for-assisted-living

http://www.carepathways.com/articles/when-is-it-time-for-assisted-living-or-nursing-home.cfm

https://www.agingcare.com/Articles/time-for-assisted-living-139755.htm

I’m still in a constant battle with my weight and now am totally out of condition.  I was in hospital last summer for a month on very high steroid doses.  That weakened me to the point when I knelt down on the floor, I couldn’t get back up…had to call 911!  My husband tried but practically pulled my arm out of the socket.  The MT got me right up.  So believe it or not, although I have gotten my quads stronger, over all I am quite deconditioned.  I was admitted on March 1st of this year for asthma again…for a week this time and the day I was supposed to come home, I dislocated my left hip (for the 7th time) and had to undergo replacement surgery for the 5th time on that hip. So I ended up being in the hospital for two weeks

I wrote and published a book…called “Treasures from Darkness” by me, Cynthia Lott Vogel and it’s been out now for 1.5 years and sales have been moderate or slow.  But i didn’t write it to sell, oddly enough. I wrote it because I had to give voice to my story. I had to tell it to the world, eschewing all privacy and disclosing secrets.  All for the sake of the story.  Or for the purpose of catharsis.  So now it’s written…and available on Amazon, Barnes & Noble,  I believe Christian Book Distributors   still carries it as well.  If you end up purchasing my book, please, I beg you, write a review with the company from whence you bought it.

My marriage  has been from hell and as is sometimes as good as something pleasant.  My husband has morphed from a bitter enemy to a sometimes friend.  He can still be pretty harsh but we do have some communication. We are currently sharing a new (on my part) and revived (on his part) interest in fountain pen collecting. I have a rather feeble collection of 8 pens, mostly very inexpensive pens from a company from China, Jinhao.  They are cheap as dirt but write like a dream….and are quite beautiful.  Any way you didn’t come here for a pen review.

Just today I took a look around my house.  We hire a lady to come and clean for us every two weeks…but she really does NOT do a stellar job.  But sometimes she stays for some OT and we do projects.  Last week she took all the books from my bookshelf and cleaned it off and I reorganized the books into recognizable topics.  It looks MUCH better now!  Next week we are going to tackle my closet and take the winter stuff 0ut and bring the Spring/Summer stuff up from the basement.  Anyway, in my look around my house I saw a number of “projects” that need to be addressed.  Just 6 or 7 years ago…or even 5…I would have addressed these situations with competence, energy, and motivation.  NOW???  Zilch in any one of those categories. I’m lucky if I remember to make a PBJ for my husband’s lunch the next day!

What is stopping me?  OK : 1) Pain.  My ankles are bone on bone as is my cervical spine. Hands are twisted and swollen. Each step relays terrible pain signals and further fogs this 53 year old brain.  2) Fatigue.  Fatigue is a compatriot of PsA and whatever other autoimmune diseases I have. 3) Lack of motivation. (probably resulting from fatigue) and 4) terrible incompetence.  I don’t know where that self-assured lady went who used to do all these things for me.  OH WAIT: she was ME!!  But somehow.  Brain Fog has taken over.

So I made a list…I’m going to do what I can to chip away at it….and the rest the housekeeper can help me with.

I can’t promise regular posts here. My other blog keeps me pretty busy.  But if my guts need to spill out somewhere—I’ll be back!

I’d gotten horribly fat from steroids and all these psychotropic meds.  I need to lose that weight. I’ve worked on that in Futility for the past two years.  Now I’m doing Dr. Joel Fuhrman’s “Eat to LIve” (ETL) diet, and Praise God! The weight is coming off.  I feel good.  healthy…even though I know I am still detoxing…still in transition…..My body is most comfortable vegan  Most comfortable with lots raw.  My husband is doing the diet too…however, he is less willing and  enjoying it less.  He had five cardiac stents placed recently and really NEEDS to do this diet in order to regain his life and health.

At the moment of this writing, my right arm is throbbing.  My shoulder is really hurting.  I know I need this replacement surgery.  I know that the pain following it cannot be much worse than the pain I have already.  I am scared because I know I need the best possible care afterward…but the home care agency that will do my PT leaves a lot to be desired. I hope they are competent enough.  IF I were wise I would do it this year….since my out of pocket expense is almost all paid. I don’t know.  Maybe I will.  If I do it will be at the end of the summer…before I have to put on lots of heavy clothes but after the majority of the summer has passed.  I don’t want to spend my summer in rehab.  Maybe I will do it late August.  I want to do it so that the  12 week rehab is all in one calendar year.   So that means I have to have the surgery before October rolls around.  So yeah.  Maybe September.

I wonder how long it will take me to lose this weight?  People seem to average ten pounds a month after the initial spurt is over.  Initially, I was losing a pound a day….but yesterday was the first day I didn’t lose anything.  I’m hoping to lose twenty pounds in the first month…..so it should take me about 9 months to lose the 100 pounds I should lose.  Now if I lost a hundred pounds I would be REALLY skinny. So maybe that is too ambitious a goal.  I would look really fine if I only lost 80 pounds.  Which would make it 7 months.  So by my anniversary in November I should be looking very good.   I can’t wait.

you and I have history

I nary return.  your jet eyes plow into cloud bursts

Tear storms, short rain, intense pain.

You cannot begin a rumor without a scandal itching

to be told.

The initial dagger, drawn lines, blood ties.

infection snake bitten apples

Do

not

bite

the

bait

My marriage, which has been going down the toilet for the past ummm 23 years is in its death throes.  Maybe it’s wrong of me to say that.  Maybe it’s wrong to give up hope.  But you know what? Hope hurts.  It hurts like hell when it’s unfulfilled.

Tonight, my spouse and I had “words”–cruel, heart-stabbing words.  He mocked the fact that I have a mental illness (which is pretty funny because so does he and it remains untreated.)  I said the unforgivable thing.  I said “I hate you!” and felt like I really meant it, which is even worse.  So now I sit here, guilty , alone, hurt, and not wanting to breathe another breath.  I’ve even thought of a way that would be so easy to tempt my life to cease…without being directly ” a suicide”….I know it’s a big risk to say that here, because, what if my blog has been discovered?  Or what if I die, deliberately or not….and my family reads this…they will never know for sure ….

I don’t want to do that to them.

But at the same time I NEED TO EXPRESS the severity of the situation. I need to say those words which are swirling like acid toilet water around my heart.

ready for it?

I don’t want to live anymore.

And I feel guilty saying that, me with my wonderful “uplifting” other blog. It’s like the suicide prevention person taking a swan dive from a building.  And I also don’ t want to discourage those who are struggling.  I don’t want that at all.

But at the same time,I can’t ignore this pain. I have to express it or burst.

And maybe the expression of it will disarm it, and defuse it….to keep it from exploding into some violent act of self-hatred.  No, that’s wrong.  It’s not self hatred.  It used to be self hatred.  But I no longer hate myself.  No, now , my death would be all about avoiding pain.   –the pain of a mortally ill marriage.  The pain of a mortally ill body.  The pain of loneliness and the pain that comes with the loss of independence and freedom in functioning. The pain of dead dreams and unmet potential.  That is what my death would be about.

Physical pain.  Life pain. Death pain.

I would really rather it be about victory.  Overcoming. A “graduation party”…..

I would really rather not have to push God’s hands in a direction that I want which is against HIS desires.

Shoot.

I can’t do that.

I can’t wreck my death.  My death is going to be good, a holy, a victorious,an accomplishment, a reprieve, etc etc and on and on.  I can’t wreck it.

But I certainly can and certainly will ask God to speed it up. Hurry Lord.  I can’t hang on with these fingernails for too much longer.

I frequent a forum for people who share my mental illness….and on this forum some time ago, one of the more brilliant however volatile  people and I exchanged “words”….It got so ugly that I left the forum for a number of months.  Well, the person in question, I later found out, was at that time in the process of losing his mother to cancer….and probably a lot of his behavior was explainable by that fact.  However, he has been and continues to be a person to be wary of in that he can make really scathing and unkind remarks if he decides he doesn’t like you.

And it’s a pretty safe bet that he doesn’t like me.

However, I just did something which was either foolish or inspired….at any rate it was terribly risky….and I’m having fearful thoughts about it now.  Possibly I took this risk because I’d just taken another risk and called someone who had been  a good friend but who was decidedly unfriendly to me the last time I called her….And today’s call went really well.  So probably I was feeling cocky and secure while riding that wave and may just be heading into a tsunami beyond my surfing skills.

The person in question is trying to drum up members to form a book club….with the goal of getting us started reading once again.  Reading is something that,with schizophrenia, is a great challenge….and can only be done slowly and painfully…at least it is for me and that is also what I hear others saying as well.  So I gulped and sent this man a note and apologized for the past incident,…offered to make peace and agree to maintain it….and told him I’d be interested in joining the book club.

But now.  Now my mind is going wild with all the possible ways this man can turn around and make me look like an idiot.  And I’m afraid.    I’m not afraid he will hunt me down and harm me.  I’m afraid of confrontation.  I’m afraid of hostility.  I don’t know him well enough to predict his response.  And the suspense is killing me.

I’m not angry. I suppose it’s a kick in the gut that I deserve…If I was “too busy” for her…then why should she not be too busy for me in return? And face it; those days of laughing, spewing mouthfuls of donuts or hot chocolate; buying eyeshadows; dragging her to some sale or other…those days are gone and will not return. I’m old. Fat. Too damn crazy to be much fun for anyone.

 But you know what? I WILL NOT BECOME MY MOTHER IN LAW. I will not live and breath depending on whether some careless grandchild stops over or not. I will not wrap myself in bitterness or longing for a marriage which is gone and maybe never even was. So if I’m not all that If I refuse to be all that; then what can I do/be? I feel it. The sucking swamp edges of despair….lapping on the beaches of my mind, slapping their onerous message

:[[ you cannot win this. There is no escape.]]

If I could live anywhere, where would I live? In a town, large enough to have everything I want or need and small enough to be pretty. Must have public transportation. I would have an apartment….with good closets and a large kitchen. I would have a circle of friends…Not just old friends who too, are waiting to die. But young friends. Friends who go to farmer’s markets…and thrift stores….Friends like Becky. I would sometimes have sleep overs. Feet tucked warm into flannel gowns, doing each others’ nails and cooking a new recipe. Making whole grain waffles and fruit for breakfast the next day. I would belong to committees—art associations. Help for the homeless. Pregnancy Center. I would join a gym and would walk outdoors everyday. I would also garden. You seee…. ?A paragraph of dreams. Dreams that are like Whipped Cream…soft, sweet and light on the tongue for a second….and leaving you suddenly wondering where it has gone.

 [[ You cannot win this. There is no escape. ]]