[scorpiosis37]

I just got some bad news last night. I'll talk to my T about it next session but, in the meantime, I wanted to post here for support.

I've been having (physical) health problems for 3 years now, and have been passed around from doctor to doctor, with each one being unable to find anything, and unwilling to dig any deeper. It's been incredibly frustrating to be unable to find a doctor who is willing to "go to bat" for me by really taking on my case and not stopping until they arrive at a diagnosis. I keep getting told that I'm young (in my 20s) and I'll be "just fine." But I'm the one in my body, and I've known for some time now that I'm not fine. Well, anyway, the most recent doctor sent me off for another MRI (even though she claimed I was "fine") and something showed up in the results. I still have to get another (different kind) of MRI to confirm the findings-- so the diagnosis is not definite yet-- but it looks like I may have the same (debilitating, incurable) disease that my biological mother has had for the last 35 years. I'm actually at my parents' house right now (in another state) for my dad's birthday, and he keeps telling me "that's exactly what your mother went through" and "yup, your mother went through 4 years of doctors telling her she was 'fine' until they figured it out." It feels very surreal to hear my dad keep saying my biological mother went through everything I'm going through now. And seeing her in the house is difficult. She doesn't know who I am, she can't walk without assistance, and she asks the same questions over and over again because she doesn't have memory recall. She's been like that since I was a child. And now I'm being told that might happen to me?

For those of you who have followed my posts, you know the primary reason I'm in therapy is because I've never had a mom. I missed out on any form of nurturing, love, or attachment growing up, and that lack has been the most significant factor in shaping my life experience. And this disease is (at least part) of the reason I never had a mom. I'm really not afraid of being sick-- I've been sick for 3 years with no explanation and have just had to suffer silently while keeping up with work, partner, family, etc-- at least, if I get a diagnosis I can stop searching and fighting to try get medical attention. But having the same disease as my bio mom would definitely bring up a lot of emotional issues that I would need to work through in therapy. It's the ONLY disease I've ever been afraid of getting. Granted, I think my bio mom's biggest problem is her mental illness not her physical illness-- but, my whole life, my dad has blamed everything on her physical illness. I was not even told her mental health diagnosis until 6 months ago. And, luckily, I'm not mentally ill; just physically ill. But still-- it's a lot to handle. I'm only in my 20s and I don't want to live the rest of my life knowing that my body is going to slowly deteriorate, just like hers. I just went for a 3 mile run (which I do every day), and realized that there may come a time when I can't do that anymore...

I wish it was Monday so I could contact my T...

Awww Scorp, I hate hate hate how doctors dismiss things even when you insist you are not well and know something is not right. I feel for you. This is hard to deal with. I wish you didn't have to wait the whole weekend to contact T. Hugs hugs hugs hugs.

[missbelle]

Thinking of you!!



Please keep me informed of other tests etc........

[Butterflies Are Free]

I am so sorry to hear this and will be keeping you in my thoughts.

[rainbow8]

I am very sorry to hear your news. I hope the other MRI shows that you don't have that disease, but if you do, like you said, you will be able to concentrate on coping rather than finding out what's wrong with you. Maybe there are new treatments that weren't available for your Mom?
Can you leave a message for your T instead of waiting until Monday?

[unaluna]

(((scorpiosis)))

[bluemountains]

You are being proactive, Scorpiosis, which is so important in dealing with your health. You are leading a very healthy lifestyle, also important. I know that your mother's mental state is very scary, and I have the same worrries, but you are doing all of the right things. You are an inspiration to me because you are willing to work so hard to be healthy. Hopefully you can focus on what is, instead of what might or might not be.
Bluemountains

[ECHOES]

What a very frightening time for you right now!

I'm hoping the diagnosis isn't the same. Or, if it is, then I will hope that there have been advances in treatment since your bio mom's diagnosis.

Please know I'm thinking of you

[scorpiosis37]

Thank-you everyone for the supportive comments! I really appreciate it!

Originally Posted by rainbow8

Maybe there are new treatments that weren't available for your Mom?

Can you leave a message for your T instead of waiting until Monday?

As for treatments, there isn't anything currently on the market that is better than the medicine my bio mom currently takes/has been taking. There is a new medication going through clinical trials right now, but it's too early to tell whether it is a better option. Regardless, if I do have it, I think my prognosis will be better than hers because I don't have her mental health diagnosis, I live a much healthier lifestyle, and I have a much more determined/positive personality. I really believe the last one makes a difference.

Yes, I could leave a message for my T (and I could probably talk to her if I asked) but I'm not going to. It's the weekend and I'd rather give her the time/space to relax and be with her family. I know she cares about me and that she has been worried about my health, and I don't want to interrupt her weekend to give her bad news. It's also better for me that I turn to the people in my RL for support, as opposed to rely on my T. I don't *need* to talk to her right now. I talked to my dad, my sister, and 2 of my best friends. They've been really great and supportive. I also posted here and got feedback. I'll be okay until my appointment on Monday.

[Perna]

Good luck on Monday. Hope your tests are more positive than you are anticipating. I remember when I got an illness and my stepmother was quizzing heck out of my father about what my mother's symptoms had been. Luckily it was something else.

How horribly difficult for you - it is impossible to imagine what it must be like, but I am so sorry you have to deal with this.
As you say, getting a diagnosis is in a way a relief, but I still hope the second MRI won't confirm the results. You would still need to find out what is going on with your body, and that is incredibly frustrating when the doctors won't believe you. (That I can relate to, and I'm sorry you are having to go through it.)
Keep us posted - we're all here for you if you need us. I'm glad you have support in RL as well.

(((HUGS))) SCorposis, thinking of you and hoping your tests show up negative and that your therapy tomorrow can give you some relief!

[Dreamy01]

I'm sorry you might have a serious condition. It is frightening to be told nothing is wrong when you know there is. I've been through the same with doctors.

I hope that what you fear doesn't materalise but that if it does you have the strength and support you need to live with it.

[mcl6136]

I am so glad that you can enjoy your running in the moment....
What an awful and scary time for you.

Hugs to you,

MCL

[scorpiosis37]

Thanks everyone for the supportive comments! I had my session with T this morning and she was really wonderful. She told me that, after my session last week, she took the (limited) information I had at the time and called her friend who is a nurse to ask questions about what she thought my results meant. I can't believe she cared enough to call her friend, in her spare time, to ask questions about my test results. It really makes me feel like i have someone who is "on my side." Her nurse friend also told her my test results are most likely a sign of *disease mentioned above* so she came to the same conclusion my doctors are leaning towards. So, in that respect, my T wasn't surprised by the news, but I could tell she felt kind of devastated for me. I could hear it in her voice. She also said, at the end of our session, that she's going on vacation in 2 weeks, which will probably be around the time I get a definitive diagnosis. She told me that, even if she's gone, she wants me to call her and let her know. I told her that really wasn't necessary; I would be fine waiting until she got back. But she insisted; she said she'll be thinking about me and she wants to know as soon as I know. I really appreciate having her in my life. It's so good to feel like I have people around me who care about me, and that I don't have to go through this alone.

(Next step? Telling my partner. It's her birthday tomorrow, so my plan is to hold off until a few days after her birthday. No need to spoil her b-day worrying about something I'm not even certain I have.)

[ListenMoreTalkLess]

I am so glad that you have the incredible support of your T as well as other people in your life to help you through this process, whatever the outcome.

I wish you the best of possible news when you find out the results. I think that your perspective on chronic disease really healthy and thoughtful. I think that most doctors would agree that the course of any disease is unpredictable, and different in most people, and that overall healthy habits like the ones you have make a huge difference in the progression.

I also think that should you have inherited this disease, you will not be this disease. And that if it should turn out that you have the same disease as her, you will not be her, in any way.

[purple_fins]

You are in my thoughts

I always appreciate you here-- sharing your insights.
Please keep us posted on how you are doing.

fins