Tuesday, November 22, 2011


I have quite a few decisions to make. The reality of my situation isn't pretty. Our realtor looked into the current market value of the house and gave a rough estimate of what its worth now. It is underwater by a significant amount. It's a bit shocking to see how far down the value of the house fell in less than 14 months. It looks like it might be either a short sale or foreclosure situation.

I don't care either way. The only thing I'm concerned with either scenario is if the bank can take what's in my savings account. I've had some money in there in case I needed surgery since insurance would only pay for 80%. It's not a lot-enough to pay for first and last months rent plus deposit, a bed, bed frame, and a few out of pocket medical expenses.

As long as I know my money is safe (its all I have left) I would go with whatever works best for my ex since she has more to lose than I do at this point.

I don't have much in the way of material possessions. I have only 2 pairs of jeans which fit me, and 4 pairs of sweats and comfy t-shirts etc...Being housebound I didn't need a big wardrobe. I'm going to sell my mom's antiques as even if I stayed here I wouldn't be able to afford a place big enough to keep them.

I've been researching medicare plans to see which plan would cover the medications I'm on. I found one which covers them all. It will cost me an additional $171-221 per month in addition to the Medicare premium I pay for original Medicare. All told I'll be spending approximately $300 for Medicare.

The premiums for Medicare in addition to my student loan (which does not qualify for disability discharge) will eat up almost half my SSDI check.

I've been redoing my budget over and over trying to find ways I can save money. If I don't have a phone, cable, or internet I can afford a little over $500 for rent. If I do include them I can afford about $400 per month towards rent.

I've been searching craigslist to see what's available in that price range. It's difficult to find. A high school friend told me about a place for $430 but the owners' smoke cigarettes and have 12 cats so that isn't a option.

Staying in this area is no longer an option for me so I'm looking at places out of state, in the desert, etc...

Although its scary to consider moving far away, that's the reality. There are no other choices at this time. Part of me doesn't mind moving away. There's too many memories here-memories of when I was healthy and so on.

Thursday, November 10, 2011

From Bad to Worse...Next Steps

Quite a few people have asked me why am I not staying at the house and are wanting me to really "fight for my rights" and saying since I'm sick I should be the one to stay at the house. My response to that is I don't have the energy for a fight nor do I want to go into a fighting stance. All my energy is taken up trying to get through the day with the amount of stress I'm experiencing. It has started to affect my health and I can't afford to lose anymore functioning than I already have.

All I want is to resolve things as peacefully and friendly as possible and move on. It's complicated being co-owners of the house and a bit over my cognitively challenged brain so I'm seeking consultation to find out what the options are. That's it.

I do not have the energy to spare in trying to engage in making her be the bad guy. While I think it sucks that I had absolutely no warning and therefore no time to prepare financially in anyway I think its something that can be solved amicably. At least I hope so.

I have no desire for revenge or to get back at her or anything like that.

I hadn't wanted to try to do a budget until today. After I added up monthly expenses including food, utilities, loan, etc...to see how much I would have left over for rent, I discovered I have $75 left over to pay for rent and that was a conservative estimate. I didn't even include things like copays for doctor visits.

So I tried to see if I was eligible for any other type of financial assistance. But because I co-own a house I'm not eligible for any other type of assistance as the house is considered an asset. Even if I were eligible for more money it might be $50 or so. Not much but every bit counts.

I am angry about all of this but I'm trying to stay out of the anger because it isn't good for my body.

So I'm stuck. Once again I'll state I have absolutely no idea what I'm going to do or how I'm going to get through this.

I'm trying to keep my stress level down but that is difficult when I cannot afford to pay rent ANYWHERE. Everywhere I turn I come up against a brick wall. It feels like I'm in a nightmare.

I'm trying to nurture my heart and soul by reading Pema Chodron's "When Things Fall Apart", Toni Berhard's book "How to be Sick, listening to the audio version of Clarissa Pinkola Estes "Seeing In the Dark", and Sharon Salzsberg's audio version of "Faith". When I can't sleep at night I plug my earphones into my Ipad and listen to one of the two books above. It does help but only for a few minutes at a time.

It's a frightening place to be and all I want is for all this to be over with. I feel like my fight isn't with my ex but rather a fight for my very survival.

I've exhausted all my resources at this point. I didn't get my SSDI check this month because it was stolen back in June. They sent me a replacement check which I deposited but whoever stole my check also deposited a check which triggered a red flag in the system that they had overpaid me so they withheld my November check. The SSDI worker told me its clearly not my signature and has a different bank account on it so it got forwarded to the Department of Commerce/FBI. Because the Dept of Commerce is so overwhelmed it could take months before I get reimbursed. I was told it isn't considered a priority. So, I did not get a check this month.

I have a student loan. Last month I went online to pay it and ended up paying for both October and November by accident. Thank goodness I did because I wouldn't have been able to pay it this month.

It feels like an impossible situation. I see no way out and I don't know what I'm going to do.

People might wonder why am I talking about this on a public blog. I do that for two reasons. One is that its all too common for people with chronic illnesses to be dumped by their spouse/partner and maybe my experience can benefit others although right now my experience my frighten others. The other reason why I'm blogging about this is because I'm trying to gather all the support I can get. I have no pride left and I've got nothing to lose anymore.

I simply don't understand why I can't get a break. It's been a long and difficult four years. I had to fight to get approved for SSDI. I've had to fight to get from bedbound to housebound. I have no fight left in me anymore. I'm too tired, I'm way too tired.

So if you are so inclined I could sure use prayers. It seems it will only be through a Divine intervention that I can find a way through this.

Sunday, November 6, 2011


I thought a lot about whether or not I wanted or should post recent events but I feel broken and devastated. I'm putting it out there that I am in need support and advice. And I need to connect with my blogging friends. The advice I've received so far is to talk about it as much as possible and to connect with people, animals, nature.

I thought I would be one of the lucky ones whose relationship would survive in spite of this disease. But I still felt a sense of insecurity because I was so sick. I could sense an ambivalence and would ask if things were okay and are things okay between us. I was always told yes things are fine, good, okay.

But that changed Thursday when I received an email from her stating she couldn't do this anymore. The previous weekend she was very preoccupied and I kept asking what was going on and finally said to her "this was what you were like before you broke up your last relationship". I was told things were fine and she was concerned about something else. I knew in my heart that it was about the relationship. I didn't want to believe it.

Wednesday night we had an argument because I knew something was very wrong and I wanted to know what she was thinking about the relationship. I had a strong gut feeling that she was thinking ending it so I confronted her about it and said that if she is thinking of ending she needed to tell me because physically I could not handle the stress of a long drawn out break up.

And I got my illness thrown in my face. She said I would never be the same person again because of the illness as well as some other things. I think it was said out of anger but it hurt nonetheless.

Early Thursday morning I called her to see what was going on (I left Weds night to stay with my sister). When I found out she had canceled her mom's visit I knew then it was over but I still held on to some hope that it wasn't. She and her mom are very close and so much alike its uncanny. I knew it was a big deal for her to cancel that visit. I'm sure her mom would have loved to be there to support her through this.

As I write I'm aware that I'm trying to find that balance between wanting to share what happened but not wanting to go into too much detail so as to protect her privacy. While I thought it was rather low to break up over an email after being together for 7 years a part of me also understands that it must have been really hard for her to tell a chronically ill person that she was done.

I'm devastated. We'd bought a house together a little over a year ago. We rescued one cat and adopted a wonderful golden retriever maybe 2 months ago. I thought of us as a little family.  I'd lost my 17 year old kitty that I'd hand raised from 4 days old after she was abandoned by her mom. She and I had a special connection. She died maybe 5 months ago.

The master bedroom had a large window that allowed me to watch the birds outside. We set up bird feeders and a bird bath so as to attract other birds. I started taking pictures of them and was pleased that I'd finally found a hobby to take the focus off how isolated and lonely I was. If I was too crashed to go out back I could take pictures from the bedroom window.

I spent over half by SSDI back pay on the down payment for the house. I had reservations about buying a house and wanted to wait because I'd just gotten approved for SSDI and received the back pay and wanted to buy both of us some things as a treat that we'd survived my not having any income for 18 months. I was going to use the rest of the back pay to pay for out of pocket medical treatments for ME especially since I could not find a doctor who thought this was a real illness.

But I knew it was her dream to own a house and I wanted to make sure that happened for her because of all she had been through with me and this disease.

I'd gone through some expensive medical tests the month after getting approved for SSDI and insurance only paid 80% so I forked over a bunch of money to pay for medical bills. By the time everything was done I had little money left.

Now I find myself in a situation where I cannot find a place to live on the amount of money I get from SSDI. Even share rentals are too expensive.  This area is already expensive and with the housing market doing so poorly it has caused rents to go up And all of them state they want someone who works and is not home all day. It seems no one wants to live with a disabled person. The only way I could afford anything is to move far away but I can't do that because I need help with some things and I need to be closer to my family.

I don't know where I belong anymore. I don't know how to go through this without the distraction of a job or being able to do things healthy people get to do when they are in crises.

I no longer have the money to pay for medical treatments. Without the antivirals I'm on I become much sicker and bedbound.

I have no idea what to do. Thank God for my sisters' and their family. Both have said I could stay with them until I find a place.

I'm terrified. I can't believe that I'm in this position. Just 5 years ago I was doing my post doc, my private practice was growing and I so close to getting the required 3000 hours in order to be licensed. My dissertation was well received and I was pushed to start writing and get published. I was hooked up with the right people who knew publishers and various journals so it was a guarantee I would get published. Plus the university wanted to incorporate my dissertation topic into their curriculum. No one had written anything on my topic so it was a new approach. They invited me to apply for a teaching position.

And then I got sick one year later. And I lost it all but at least I still had my relationship.

I'm heartbroken that its gone. I begged her to stay and said I would do anything to save the relationship. Anything. But it was too late. I didn't see it coming like this.

I feel like a failure. I feel defective because my body is broken, my heart is broken, I'm broken. I was not perfect in the relationship. I didn't handle my illness very well but I was starting to accept it and grateful I was in a house with a yard. I know its hard to live with someone who is chronically ill. Well, at least I know it was hard to live with me being chronically ill.

I think what partners/spouses/caregivers don't understand is that we ME patients are acutely aware of how the disease affects our partners/spouses. I know I was and I lived with a constant sense of guilt that she had to work so hard. I'd had a rough time physically after taking the trip in August. The trip flared my back  and the pain so bad that I needed to get a lumbar steroid epidural. I crashed even more after the epidural. Not two weeks later I needed an urgent root canal. The root canal put me under. The following two weeks I was  frightened at how exhausted I was. There's really know word to describe the bone crushing fatigue. We need one because saying I'm exhausted or fatigued minimizes what is actually occurring. It's really not about fatigue but that's beside the point right now.

I have our dog with me because she was considering returning her to the rescue organization as a last resort. I couldn't bare that because Chelsea was originally surrendered to the rescue because her owners got divorced and neither could keep her. She was so stressed at the time that she was eating everything. They kept her in the garage and she ate something poisonous resulting in liver failure. But the rescue organization had an excellent vet and they nursed her back to health against all odds. She needs liver supplements but she's okay. She's a wonderful dog. I can't imagine having her experience that type of abandonment again. She's been through too much and her soul needs healing. She was really starting to settle in before the break up.

Last night Chelsea woke up suddenly and started barking-a different sort of bark-as if she'd just woken up and didn't know where she was or where I was. She was so anxious that I got down on the floor and put my arms around her until she settled down and went back to sleep.

She wanders around looking as lost as I feel. It's as if we are both stunned by what happened. We're both out of our routine. I'm so beside myself with grief that I couldn't figure out which medications I needed to take and I couldn't remember if I'd taken some of them.

I do not know how I'm going to get through this. I really don't. The odds against me feel insurmountable. I've put word out in the ME community that I'm going through this and the response has been incredible. They get it and their responses have felt like they know me. I've been incredibly moved. One Facebook friend wrote "we are a community. when one of us can't fly we hold them until they can".

So I'm taking things one minute at a time. Yesterday it was one second at a time.

I need a miracle. I need to find a way to get more income. And there is so much more to do when ending a relationship when one is chronically ill. It's different-its much more difficult. I think it would have been a bit easier on me emotionally if it hadn't had my disease be the reason she ended because what I'm left with is I'm no longer lovable because I'm so disabled.

I'm afraid of what the stress is going to do to my body. I can't imagine doing a share rental because I don't want people I don't know well to see me when I'm in a bad crash.

Maybe being broken open like this will ultimately be a good thing.

Intellectually I know that rebirth follows death as expressed in nature when the barrenness of winter allows the birth of Spring. It's just hard to have faith in that right now.

All I know is that I'm hurting real bad inside, I'm grateful that my family took me in, and I'm grateful for the ME community. It is an amazing group of people who know suffering. We all share the pain of having an illness that is so stigmatized and not being believed, etc...

The four positive things that have come from this are that I get to be around my niece and nephew as well as my family. And being in a relationship with limited energy meant that I had little to none left over for anything else. Hmmm....I've forgotten what the other 2 are.

(pardon any spelling or grammatical errors-my brain is fried from stress and lack of sleep)