22 11 2008

First a bit of goings-on: I’m happy to report to you all that I’ve finally lined up enough work to get me into December without this horrific fear that’s been like a black cloud over me for 3 months.  Now that the reality of the economy has had a bit of time to hit everyone, clients are finally calling again.  I’m still looking for a permanent job.  I think my time for freelancing might be over.  But we’ll see.

I was feeling very low and down this week.  My schedule is totally off since I’ve been doing resumes all night long, then during the day running errands, making necessary phone calls and such, then another night of resumes. Then finally after 2 days without sleep I crash the entire day and feel super crap. It’s my own fault for treating myself so badly and not being able to keep my life normal when I have no regular structure to it.  Jax lives 2 doors down now and I’m still outrageously sad that he’s left me.  We’ve hardly seen a moment of each other this week.  I wrote him an email explaining that I don’t want to date anyone but him, but my friends and family are so worried about me that they want me to date… I’m not sure what to do.

DATING QUESTIONS: If I do start dating, how long do I wait to tell the guy about my chronic diseases?  Do I put Ra and CP in my internet dating page so they know what they are in for? What if I have to cancel our date?  Would I need to admit it’s because of my diseases?  Do I explain my weight is from prednisone and I’m trying super hard to get rid of it?  Do I say I’m going to weight watchers and just starting to go to the YMCA but I’m still heavy. OR do I make no excuses for anything and just let it all remain a mystery. On the nights I’m “unavailable” aka in bed, I’ll simply seem more mysterious.

I need to change my outlook & perspective on this whole thing.  If I can run a company than surely I can take care of myself and my chronic diseases, right?!?!?!  I suppose I’m still upset that I no longer have my support system of Jax.  My support pilot got tired of the ins and outs of illness.  I am still pissy because I never thought we’d break up. BUT I did receive a wonderful letter/comment from M.Midwest. Here are my favorite parts:

All of the frequent drs. appts. and tests and treatments and pain control adjustments robbed us of normal, leisure time together. Sometimes when he felt like going out to dinner or going out with friends I was genuinely too sick to have the energy to go…. In talking to other people in a large chronic illness support group I’ve heard that…It is such a hard fought battle to get used to the illness itself. During the adaptation phase you are busy just surviving and getting adjusted to treatments. Don’t be too hard on yourself. You were trying to get through the HARDEST PART of your life at the same time you and Jax were cultivating your own relationship…Take your time to heal.By the way, I did meet and marry a wonderful guy 3 years later.Take your time please,girl!  Let your heart heal and go slowly. I feel for you and know that you want to date right away. Please wait though.When you’ve been in a long relationship it’s easy to want to hurry up and cover up the pain with someone new. Wait awhile,though. Get through the holidays and heal a bit longer.Thinking of you-been there-and it DOES GET BETTER.

This explains everything I’m going through in a capsule.  Thank you so much.  My folks want me to start dating just to keep my mind off of Jax. But it is amazing how much the idea of dating brings up so many new questions for me.   Maybe I need to find a chronic illness support group in my area?  I looked online and found nothing within 28 miles.  But if anyone has some ideas on this front please do share. I’ll give you more from the maybe dating fronts soon.  So far I’m just trying to remember to take care of myself.

Love,   Sasha xoxoxo




7 responses

5 11 2009

this is a difficult situation and, for me it’s been extremely arduous. i have very rare neurological diseases mixed with a few other things and have to wear lots of special equipment that effects aspects of a relationship greatly.

in the past when i listed everything; i had lots of people read my profiles but never write me and when i edited my description leaving out my disabilities and played it cool two things happened: 1. if i told the person during our initial chat they were upset and thought i wasn’t being honest which can make them question my sincerity in the future (first impression stuff) and then wanted a involved explanation as to why i didn’t list it upfront. 2. when i waited until we knew each other well and a few times i thought i had met “the one”, everyone was upset that i didn’t disclose everything up front and usually i didn’t hear back from them after that chat.

it’s a tricky situation and unfortunately all of the disabled specific dating sites are full of spanners and fake people looking to take advantage of disabled people so don’t waste your time, regular/non-disabled dating sites are the way to go and from experience, honesty is your best option.

good luck! michael

8 03 2009

Nobody is 100% free from health problems but the cronic health problems need to be given a thought based on how much it is going to give trouble to your dating partner. You cannot say you sincerely love your dating partner and then you put him life long trouble that cannot be love.
The right moment to tell him of your illness is when he is interested to know more about you.

Anand Kumar

20 01 2009

i think you should always tell the person you’re dating up front. that way there’s not miscomunication. and you’ll know up front, before your feelings get to involved if he/she can handle it.

5 01 2009

Hi Sasha,

I don’t have any real answer, but I’d like to share my experience. I have congenital CHF, and have suffered from it all my life. As I got older I felt worse and it did affect my relationships.

Back in 2003 I met someone who was wonderful. We were together until recently when I ended up having a Heart Transplant in September. She basically couldn’t deal with it, and moved across the country. After the better part of 5 years, she just up and left. I didn’t even know until my parents told me. I was in the hospital for 3 months, and she fled after month one, leaving our apartment, her cat, most of her stuff, she was just gone.

I am home now and getting much better, but the loss remains. We were best friends, she always understood my issues and we supported eachother.

I’ve only talked to her once since I’ve been home, and that was on the phone. She still cannot give me any reason for leaving, but she is sorry and apparently still loves me.

I am considering dating soon, and I have no idea how that will play out. How do you tell someone you had a heart transplant, and not have them treat you differently?

If someone has the answer to your concerns and mine, it would be great to hear it.

All the best to you.

Chris 35

27 11 2008
Joint Pain Supplements review

completly agree that once you change your perception and views about situations, the situation itself changes

27 11 2008

Where I am right now it’s late and I’ve just been on the phone with my significant other, who, among other things, suffers from chronic pain of an undetermined nature. I’ve spent almost the last hour going back and reading the posts you’ve made. I do want to say that what you’ve written here has helped me with some of the questions and thoughts I’ve had lately. You really have helped me and I’m quite thankful that I ran across your blog. I wish you all the best, and i hope to read about the good things in your life in the (very) near future.

22 11 2008
Donna C

This is only my opinion…… I would play the diseases close to the vest with a potential boyfriend. He could “just be” the transitional guy, who would be around temporarily. When you know “He” is THE guy, I would tell him when the time was right. Chances are, he will know something is a tad off, by your actions, meds lying around, appointments posted on the fridge, injections in the fridge, etc. I would rather be seen as healthy as much and as long as possible before the ‘real’ deal rears it’s ugly head. (This could help him understand that not every day has to be spent in bed, and you can and will be able to have normal activities on many days.)

Also know, I have not had experience in the dating/relationship arena, because I have been married forever. However, it is the way I let new friends learn about my inconveniences. I prefer to be looked at as a strong, healthy kick ass girl that happens to have RA, Lupus, Fibromyalgia, sleep disorder, asthma, COPD, etc, just to name a few!! And please know there are men out there who will love you for who you are and not what you have. I’m blessed that my husband has been so supportive thorough my 20 years of “illnesses”. He watches me like a hawk and makes sure I am OK. I can also tell you that I have had many more good days in the past 20 years than bad days.

You hang in there girl! Better days are ahead!

Donna C

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