Re: When family/spouses don't ask and don't seem to care.

[Guest guest]

wrote: " Today is just not a good day. I'm exhausted and he and I

have done nothing but argue for the last two days. My teen is working this

evening and the little one is going to his mother's house. Maybe I can talk to

him and not just blow up at him tonight. Maybe if I blew up more often it

would get through his thick head. "

{{{Sam}}} I'm so sorry the past couple of days have been so draining and

difficult for you. A day like yours seems to last forever, doesn't it? I think

that when emotional pain and hurt are compounded with physical pain, the stress

is overwhelming. It sounds like he's never come to grips with either your

blindness or lupus. I think you hit the nail on the head when you wrote, " It

is like he acts like I am the woman he dated and married yet won't understand

the disease I have. " He loves and accepts you as the woman he *dated and

married*, and although marriage is meant to be " in sickness and in health, "

there

always seems to be a multi-staged adjustment process that must take place in

our marriages.

It's almost like grief. There's no set or predictable timetable involved,

but rather a gradual, sometimes rocky period of adjustment which takes place, or

leads to further marital difficulties. Something he doesn't seem to

recognize is that your ears are really your eyes now, and that you need both his

patience and willingness to visually describe the room with the spa. Your own

view

of the spa doesn't translate into a visual picture, because you largely

interpret it via your other senses...and some say men tend to be more visually

oriented than women. I don't know...but although it sounds like you've come to

terms with your conditions and are living a very meaningful life, he's blind to

that reality.

It might be that a third party - a relative, friend, pastor, or other

counselor - could help the two of you communicate, and he or she might also act

as a

mediator. Your husband doesn't yet know, or acknowledge, that you're more

than willing and able to make the necessary adaptations and alterations to both

accommodate your condition and live a rewarding life as a family. But no

matter how well you've done this - and I think you're absolutely amazing - he,

too,

must change. The potential rewards for him, for you, and for the girls will

be enormous, but I suspect he needs to hear this from a third person whom both

of you respect and trust.

In the meantime, one day at a time...and I promise you that this sad,

frustrating, exasperating day will not and cannot last more than 24 hours.

Lots of hugs,

[Guest guest]

I am sorry your not feeling well. I can sympathize with you there.

I hope that you know that your in my Prayers and I hope that you will

start feeling better soon!! I know your going through so much right

now. Your husband is probably just scared to face reality. Because

when you do that things become to real and then the hurt comes in.

That is the hardest thing for a man to do I think. My husband is

trying to understand and he is little by little. I dont expect a

miricle just baby steps at first. Please know if you need to talk or

to vent I am here. I am not on everyday but usually as much as my

head will let me. My vision some days is better than otheres. But I

am with you in spirit.

Bless you my friend. Take care and try not to let things get to you.

Warm hugs

Diane

[Guest guest]

Hi Sam,

How frustrating for you! My mother lost her sight to diabetes and it was

difficult for me in the beginning. My mother would tell me... " take a look at

(whatever) and close your eyes. Now describe it to me. " I got used to having

to

describe everything to her. Her ability to understand was greatly enhanced

by her blindness and I learned to adapt myself.

Also I know that for a lot of people who are in our lives that their fear of

the unknown is really what their anger/frustration is all about. Will your

husband go to the doctor with you? Maybe trying to talk would be better if it

was done when things are not heated so to speak. I know when I'm upset my

ability to listen/speak goes right out the window.

I really hope that things get better for you. The constant stress is not

good for you. Your in my prayers, Sam.

Kathleen in Calif.

[Guest guest]

Thank you everyone for listening to me yesterday when I really was having a

bad depressing day. Hubby and I did talk a little during the day but didn't

get into any real specifics. I did take my guide dog and my cane with me

the entire time we were out and it did help relieve the pressure on my back

and on my legs with my guide with me on one side and my cane in the opposite

hand. I always take a backpack instead of a purse because the purse offsets

my balance when working with a guide dog. It makes my back hurt worse.

You know, I told my husband that I was able to hide my condition for a long

time from him, his mother, and most of his family and mine too for that

matter with the exception of his oldest brother, his wife, and my mother and

my aunt. I kept the pain at a minimum with pain meds from my doctor at the

time and what I ordered over the internet. My doctors didn't seem to be

doing anything to find the reason for the pain and were not adequately

treating the pain I had either. That is why I resorted to the internet

ordering. I was working then so I was able to afford to order online. If

it hadn't been for the internet order of meds, I would have never lasted

that last year and a half of working. I would work at my computer through

tears with my right arm pounding with pulses of spasms that would go from my

fingers, up my elbow, into my shoulder, then to my neck and down my back. I

would type until both hands were so swollen that I would have to soak them

in hot water until I could move them again. I took ibuprofen and the pain

meds to continue. I was always careful to keep up with what I took. I had

access to a PDR and drug references up the ying/yang. In case some of you

don't know, I was a medical transcriptionist and already had family with

arthritis diseases. I really thought at first that I probably had

rheumatoid arthritis or osteo. It never occured to me that it could have

been lupus.

My husband and children never seen the pain I was in because I worked at

night when they were asleep. It was quiet then and I could hear the

dictations clearer. It is hard to hear a dictation machine when there is a

TV or kids yelling in the background. I would try to get to bed before 6am

and take enough muscle relaxers to stop the spasms. If I had time, I would

run a hot bath until it got to where I was afraid to get in the tub when

everyone was asleep for fear of not being able to get myself out.

That last half year I worked, I couldn't hide it any longer. My production

slowed down. It was harder for me to work at night and harder for me to do

the things I normally did during the day that could be paced on the computer

and internet without being under a deadline. I kept telling my husband that

something more was happening than I knew but he kept referring to himself

hurting during the day while he was out walking on the job sites as well.

He spends the majority of his time sitting his butt in a truck, an air

conditioned and/or heated truck, which ever the time of the year permitted.

I had to physically be at a desk typing 120+ wpm plus using macros so I

wouldn't have to type as much long hand, if you will.

I didn't tell him about the lupus until two weeks after I was diagnosed. I

kept remembering how things went when I told him about my blindness. I just

knew this would end our marriage. This would be the straw that broke the

camel's back, so to speak. When I finally got the nerve up to tell him, I

reminded him that I didn't need the crap he pulled when I told him about my

impending blindness. I could not physically nor emotionally go through that

roller coaster again. He said okay. I told him that the doctors had found

lupus. He was quiet for a few minutes as if he didn't know what to say.

When he did speak, he asked what exactly was lupus and I went on to explain

it. I have never been one to sugar coat things. I don't want them sugar

coated to me and I don't sugar coat to anyone else. I want the truth plain

and simple without beating around the bush. I explained to him that this

was why I hurt so much all the time. This was why I was constantly getting

sick with colds and such. This was why I spent days on end either over the

toilet throwing up or on the couch in pain trying to rest. This was why I

was fatigued. But, I also explained that there was medication that would

make the symptoms a bit better but, like my eye disease, there was no cure.

I also added that though my eye disease had no cure or anything to slow it

down, lupus did have a drug that could slow it down and I had been taking it

for two weeks. I thought everything was going well. He seemed sympathetic

enough. He seemed to actually care. However, within thirty minutes of my

finishing answering his questions, he had the audacity to tell me that he

hurt every day too but yet he kept working. I was furious. I was so hurt

and so mad that I broke down into tears. I asked him if he had heard

anything I had just said. Well, it ended up with him leaving the house and

going to his mother's for the rest of the day. His mother found out the

week prior to my telling him. My mom had taken me to the rheumatologist and

the original doctor that had found the abnormal test to begin with. Mom had

spent four months going every week to doctors for more tests to confirm the

previous tests. She was holding it together but I know she was and still is

concerned and worried for me.

All this happened going on four years ago. My lupus has gotten worse. My

joints have deteriorated further. I went through a spell where I was having

flares almost every week or so. They are not as frequent now, thank

goodness, but they do come back and most of the time it seems that it

co-incides with our arguments. I really think that stress is tied in closer

than most people think to the lupus flares.

The only person he would listen to was his oldest brother. Unfortunately,

this past January his brother took a job in Iraq. You see, his father left

when he was young, shortly after he was diagnosed with diabetes. I think he

somehow blames himself for his father leaving but in all actuality, his

oldest brother threw their father out of the house. I hate to speak ill of

the dead but his father was a gambler and gambled away everything they had.

According to his brothers, their father was constantly arguing with their

mother. His oldest brother just had enough one day and at the age of 16,

threw him out. My husband was only like 6 years old at the time. He really

doesn't remember much about him. He moved to Alabama and remarried to a

woman that had several children. He got into church and became a christian

but never really did try to make amends until the year our youngest daughter

was born. He was supposed to come up that summer to meet our daughter and

meet me. I only spoke to him three times that year and it was the only

three times I had ever spoke to him. He did get to see a picture of his

granddaughters, my husband's daughter and mine from my previous marriage

since she calls my husband daddy too. His father accepted them both as his

grand daughters. A month or so before he was to come visit, he and his wife

were in a horrible car wreck and he was killed on impact. My husband and

his brothers when down for the funeral.

So, as you can see, the only person who has ever been a real father to him

has left to go to another country and will not return, if he returns then,

until his year is up. His wife is wonderful but hubby doesn't talk to her

like he did her husband. He isn't even that close to his next to oldest

brother. Since his oldest brother has left, he has blown off his closest

friends. He only has a few he is really close to as he is a very private

person. He doesn't let many people get close to him. I am the same way but

for different reasons. I was raised by a very abusive, violent, alcoholic

father. My first husband burned me really bad when he left me with a

10-month-old daughter to raise alone while he trapsed off with a

15-year-old. He tried to use our daughter as a pawn. He didn't want her to

raise her. He just used threats in regards to her to get to me and hurt me.

The only light of that tunnel is that he has caused his own daughter to hate

him. I didn't have to do a thing. I never spoke an ill word about her

biological father. She is 16 now and doesn't want anything to do with him.

She even has our, mine, my husband, and her little sister's, last name now.

I have tried to get him into counseling with a psychiatrist or a

psychologist or for us just to sit down and discuss this out and for him to

be honest with me and tell me what is bothering him most. Is he afraid that

I will die on him and leave him here with our children to finish raising?

If so, I'm afraid of that too. But if that is the case, he doesn't realize,

and God knows I have told him, that if the stress in this house doesn't let

up, he will be doing just that. All the stress is not good for my disease.

Each time stress gets high enough here, I get fever blisters, then I catch a

cold, then it progresses to bronchitis or another type of infection. Twice

I have had pneumonia in under a year and I have had the pneumonia vaccine.

It has also thrown me into lupus flares. I tell him this but it goes in one

ear and out another. His mother has talked to him but again, he doesn't

listen or when it does calm down, it is very short-lived.

What is so funny is that I fell out of love with my ex-husband. This is

not the case with my current husband. Love is not our problem.

Understanding and compassion seem to be. I have learned to live with the

fact that diabetics are moody. Stress affects their sugar levels as well.

My first husband was an insulin-dependent juvenile diabetic too so I am well

acquainted with the issues surrounding this disease. I know that with my

first guide dog he was a bit embarrassed to go out with me with a guide dog

because people look, stare, comment, and some even come up and ask about the

dog. It is natural here because there are only 2 and possibly 3 working

teams in this entire county. I heard that there may be another team here so

that would make the third but I haven't ran across that person yet. The

other is an elderly lady who I gave information about the school where I got

my guide dog from to. She got her dog from there too but she is in her 80s

and I am in my mid-30s so we don't exactly hang out with the same crowd.

<grin> She has macular degeneration which works the complete opposite of my

retinitis pigmentosa. She has lost central vision and I have lost

peripheral (ie I have tunnel vision).

Last night I finally confided in my husband that my vision is going in and

out worse now. It is like someone is playing with a dimmer switch that is

attached to my eyes. I don't know if it is the progression of my eye

disease, if it is the Plaquenil doing it, or as other doctors have asked me

- is lupus itself causing blindness or rather progression of my already

diagnosed blindness. He asked me when was the last time I went to an eye

doctor. Duh! What are they going to do? I asked him this outright though

I didn't throw in the duh part. There is no cure for RP. There is no cure

for Lupus. The only drug that can slow down lupus is the Plaquenil. If I

stop the Plaquenil, the lupus progresses more rapidly. I explained to him

again that RP, my eye disease, is not fatal, lupus, however, can be if not

cared for and treated properly.

He seems somewhat better this morning but I don't now how long that will

last. With his mood swings, there is no telling. I can't get him back to

his doctor. I can't get him to go with me to my doctor. I think he is

really terrified of what he will hear. My husband, in our early days of

dating and early days of marriage, was and to a degree still is a " fixer " .

If my power got disconnected because I spent too much money on getting my

books and tuition that month or needed more supplies for college, he could

pay my light bill to get the power back on. If I lost my phone because of

not having enough money, he would have it reconnected. If I needed

groceries, he bought groceries. When my ex was harrassing me, he threatened

him within an inch of his life. All these things he has been able to fix.

Now, he has run into something he can't fix. I haven't asked him to. All I

want him to do is accept it, have patience with me, and let's move on with

our lives.

The most beautiful and loving thing he ever did for me after I was told by

the best eye specialists around that I was going blind is ask me what I

wanted to see before I lost my sight. I wanted to see and spend the night

in Cherokee, North Carolina. My family is mostly Cherokee Indian with some

Arapaho thrown in but there are no reservations for the Arapaho tribes here.

I resemble my mother's side of the family more so than my father's side. My

mom's side is majority Native American Indian. We went to the mountains

that year and I spent the night on the reservation. It is the last time I

can remember actually " seeing " the changing of the leaves. Not too long

after that, Prince, yes Prince the Artist, came to the Walnut Creek Theatre,

which is now the Alltel Theatre for a concert. I had only wanted to see

this man in concert since I was about 12 years of age. I had sixth row

seats by the isle. A friend of ours took me as my husband despises Prince's

music. I was allowed to stand at the gate right at the stage to see the

show so I could actually see him perform because I didn't know how long my

vision would hold out. It was great. I will have those two memories tucked

in a little drawer in my mind for the rest of my life. Sure it wasn't

anything major. But those two things meant more to me than anything in the

world. I am not big on wearing jewelry. Most of this is because I am

allergic to many metals. I generally just wear my wedding band and a rune

necklace. Two years ago Christmas, when we were getting the girls Christmas

gifts, he took me to Kay Jewelry and picked out a beautiful three-stone

diamond anniversary band. He picked it out. I would have happy with the

cheaper one but the one he got appraised at $3500 with promise of increase

in value with age and it has. It is appraised at over $4500 now. We got it

on sale for considerably less and he even had the lady put it under their

microscope so he could see the diamonds and their clarity and such. The

stones are near flawless, near colorless, and are next to the highest rating

that a diamond can get. This is what I love about him. I just want that

man more. The little things.

I didn't mean to go on and on. Please forgive me. Thanks for listening

yesterday. I needed it.

Sam

When a man screams, you must learn to whisper. - Graffiti Bridge.