I miss having a social life and I'm tired of feeling like crap

[TZ]

It sucks being sick. It takes all my energy of late just to go work and come home. And trying to run errands after work...hard hard hard. Here it is another Saturday night that I don't have the energy to do anything. In fact I was sleeping until about 30 minutes ago because just going on some errands this afternoon wore me out and made me feel sick. Which is why ultimately I post here so much, since I don't have the energy to go out much. I was driving around today and couldn't even remember the last time I went out to a restaurant!
I was a really healthy person up until about 5 years ago so this is difficult to deal with.
Sorry for the downer post, but sometimes its just so damn frustrating!!!
x(

[RainDog]

1. what's the health issue?

I saw you said something about b.p. on another thread... what's up?

[TZ]

4. I have a chronic, rare blood disease

That causes fatique, headaches, tingling in hands and feet, itching..In fact so rare that even most hematologists don't know a lot about it...and add that to the fact that I'm about 20 years younger than the average patient..sigh.
In fact, I'm going to Mayo Clinic in a couple of weeks to see whats going on. The primary problem is too many platelets--most people have between 100-400..my last reading was 1,350.....

[RainDog]

10. so sorry.

what's it called?

and, excuse my ignorance, but how does that number of platelets impact a person's health?

and here are some hugs for you-

:hug: :grouphug: :hug: :grouphug: :hug:

[TZ]

13. Essential Thrombocythemia

Its so rare, when I talk to regular docs I have to tell THEM the name..most have never heard of it...
Platelets are clotting factors..I'm at risk for both stroke AND bloot clots and even BLEEDING cause the platelets made don't work right!

[Deja Q]

14. Damn.

:(

Best wishes for ya. :hug: :hug:

[auntAgonist]

23. In '75 I was diagnosed with Thrombocytopaenia Purpur .. then

I was treated with steroids and when that didn't work they removed my spleen. I've just recently been diagnosed with Thrombocythemia .. It's not essential thrombo, but there does seem to be some other complications that I need to have further testing for.

:hug:

aA

[RainDog]

29. When you first posted this thread

I googled "rare blood disease" and this came up... one of four relating to platelet production? - I didn't want to assume this was your case, but at least there's information that doctors can access via prof. channels if I can find it on google... let's hope.

Aspirin can be good, aspirin can be a problem? Clotting or bleeding?

If there's anything good to say about such a situation for someone who has to deal with it, at least you work in a field in which you are better able to understand and evaluate your treatment options and can monitor some of your own expressions of the illness.

If there's anything I can do to help you, please let me know.

I don't live nearby, but if you need a person to help you, I could take off a few days. I don't know what sort of support system you have in real life, but I know there have been times that I've wished I could ask for one thing or another and I've not known someone who would be willing to help - or if they were, there were too many "strings" attached. My kids can stay with their dad, and when they need access to town (he lives out) they can stay here until he picks them up - I have to be here during the end of May/first of June. That's the only real physical commitment that's non-negotiable in my life at the moment. Later in the year, that won't be the case (at least I hope - otherwise that means I will be unemployed! - or maybe asking ppl if they want a double expresso...)

You're always welcome to come to my place, tho it would probably make you feel worse to see the mine fields of boxes here as I've pulled things out of storage and haven't figured out where they go! but you never know... if you come here, you will leave with a good, weird collection of music. Or if I knew someone was headed this way, I'd actually give a shit and make an effort to make a pathway... I'm gonna be having a mega garage sale and figured I would hire someone to clean my house with part of the proceeds... that's how much I hate that sort of thing... so you'd give me an excuse that's not just about me not giving a crap! win-win, see? :)

I could take you to the lake where a friend of mine has a place. it's my favorite spot in town and great for lowering your bp. I don't hang out with huge amts of ppl. either., tho I have tons of aquaintances. Most of my good friends and all of my family live elsewhere. (and tho I love my family, they were Bushies for too long and... whatever. blinded by the oil industry and/or fundie think.)

I'll pm my phone no. to you, too, if you want to vent.

I've been very fortunate in my life as far as physical illness... cannot give myself credit for any of it, just the luck of the jump into the gene pool...so far. I've taken my health for granted. My problems... the big thing was, and still is in various ways, ptsd/psychogenic amnesia/resulting depression when I was kid b/c of the circumstances of my mother's death - are so manageable in comparison to 99% of anything anyone else faces. Not to make light of trauma, I don't. But, no matter what we face, gratitude for what we don't face can be useful. I'm saying that about myself, but also to say that any way in which I can help you would also be a way to help myself, if that makes sense. or you can say... hey, I may have a rare blood disease, but at least I'm not mental like that RainDog... :shrug:

Turtlesue, you are so sweet and funny and full of life.

I've not been able to keep up with all the mischief you and your crew have been up to, but after Friday, when I was trying to figure out what in the hell I was in the middle of, I found these very, very funny threads in which the sweetness of your soul was front and center. (not to mention your wild adventures with the Mulder guy with the teacup... yum.)

So you just have to manage this illness because you have to keep posting here. Sure you need a real life life... but don't forget your friends here, okay?

Since you are tired and not feeling up to going out much, maybe you'd like to compile a "loungipedia" to explain references such as "Mr. Coffee's bunk." - I still don't know what that one is about... do I have to do another DU search to find the ur-Mr. Coffee's bunk post?

oh, and in your spare time, you can be the producer for DuStrange's "The Smiley-High Club" emotiporn flick. We can create sound effects together for the parts when it's girl on girl.... laughing is always good.

[auntAgonist]

18. I have

Thrombocythemia. My platelets aren't as high as yours. I also tested positive for ANA. More tests to come.

:hug:
I hope the Mayo has answers for you :)

aA

[lightningandsnow]

2. Aww....

We can be your social life for a while. It works for me. :hug:

[auntAgonist]

3. If I lived closer, we'd do coffee .. or tea ..

at least we could get together. I don't have much of a social life either.

:hug:

I wish you felt better.

aA

[NC_Nurse]

5. I know many people have chronic illnesses that limit them. Have you ever

looked into a support group? I know it sounds hokey, but they can be great. There are some online ones too.

I've had a small taste of that sort of thing with my IBS, but it's not that bad (knock on wood!).
It's so frustrating to be sick when you're used to being able to do anything you want!

[TZ]

8. Yeah I'm a member of an online support group

But I haven't been there much lately. And since its a rare disease, getting a response can take awhile. I like posting here, cause I can get responses without having to wait hours. Having a RARE chronic disease is some ways the most sucky.

[NC_Nurse]

22. Well, at least you've got us.

:hug:

[DeposeTheBoyKing]

6. I know how you feel

I'm married and don't enjoy what social life I do have. Most of our "friends" I can do without ever seeing again. I like having just a few people I like spending time with, but I really don't have that here. And with my back problem I can't do some things I enjoy - I was just rediscovering the joy of roller skating and bowling, and I like being able to lift weights a bit at the gym. Now I have to be very careful about my movements so as not to exacerbate the problem.

I hope you feel better soon, and we can definitely get together when I'm in DC! :hug: :loveya:

[lizerdbits]

7. Maybe something will be figured out at Mayo

I've been that way due to cold and ear infection but I know that will go away, I obviously don't know the frustration of having that all the time and with no known way to get relief.

I herby order you to feel better on April 19! :)

ETA: I semi know frustration with the sleep issues I have since nothing works for that either.

[SPKrazy]

9. Well dang, you live in Maryland, I'd be your friend IRL

I'll be your friend here.

Sorry you have that disorder, and what do they do, take blood, red cells every week off you? I knew a guy who had a problem like that and that was his treatment plan, once a week they took platelets off him. Sucks though to be sick.

:hug:

[TZ]

12. Treatment

may involve going back on a mild chemo drug......I really want to avoid that...some unpleasant sides.....

[SPKrazy]

25. Sorry

sounds like a horrid thing

:hug: :hug:

healing vibes to you

and hugs

[Deja Q]

11. You need this:

:hug:

But what you described is my life in a nutshell. Though it's not as much lack of energy as it is people tend to think of me differently...

Restaurants are okay, but I try not to look up and around too much.

And because of a particular anxiety disorder brought about because of a PDD, I won't be going to an airport any time soon and being misconstrued as a terrorist. :eyes:

I'm starting to lose my health too, but am definitely ramping up exercises. The time exists, so I'm going to use it. Even if I wasn't as portly as I am, I know that wouldn't stop their looks either.

[latebloomer]

15. I feel very much the same

I was diagnosed with leukemia last May, went thru some very heavy duty chemo, then had a stem-cell transplant in Dec.(accompanied by super-heavy chemo and full-body irradiation).

Apparently, by all medical reports, I am doing very well, but I am chronically exhausted. I just manage to do what I absolutely HAVE to do, then I collapse in the bed. I do try to do a little exercise, as that seems to boost my energy level a little.

Friends keep calling-- "Do you want to come over for dinner?" "Let's go out for coffee"- and I have to turn them all down. Half the time I don't even have the energy to talk on the phone.

It sucks.

Hope they find something that works for you, turtlensue!

:hug:

[TZ]

16. wow.

Thats rough. What I have is a bone marrow issue, so there is a narrow possibility some day that I will need a bone marrow transplant in the future....:scared:
:hug:

[latebloomer]

19. I guess it is a scary prospect

but I'm so grateful that it seems to be working, and that I have not had terrible side effects.

[latebloomer]

17. I'm also wondering

abut the possibility of a stem-cell transplant for you!

My niece had a rare blood disease in which she didn't make red blood cells and needed monthly transfusions, which were staring to cause liver damage. She's 7 now, and 2 years ago had a transplant using her baby bro's cord blood, and it WORKED!

My donor was a stranger who donated peripheral blood. Yes, angels do walk this earth!

[LeftyFingerPop]

20. You have a great sense of humor...

Let it help you through times like this.

I used to be a very social person, but not so much now since I have to deal with health issues.

But you know what? I actually prefer it this way.

When it comes to friends, etc., I prefer quality over quantity, and I take a lot of comfort in simple things now, rather than going out and being the life of the party.

I am sorry that you are not feeling well. I think that you are a good person, and I wish you the best. :hug:

[greenbriar]

21. I have Chrons and I know about the fatigue and energy levels

and not feeling good


I also have to stay near bathrooms or my shower during flare ups



it really sucks and my kid said the other day...you never feel good or feel like doing anything

[quip]

24. You need a hug!

I'm feeling for you, TZ! I hope a little soiree with MN DUers (at the Olive Garden!) will make an otherwise unpleasant trip more bearable. :hug: :hug: :pals:

[applegrove]

26. That is such a shame. But we are lucky to have you on the DU.

[Akoto]

27. I know how you feel ...

I was finally diagnosed with a chronic pain condition last month, after seven years of dealing with it. The doctors basically have a name for it, but little else, including the cause or reliable treatments. I am in pain at most times, usually mild, but sometimes quite bad. There's no way to predict the bad days. I'm told that, even though the pain is severe, no harm is actually being done to me. It's difficult to grasp.

Depression really had me in its depths for a while after the final diagnosis. I kept asking myself how I was going to get by, how I'd live like this, etc. Then, I realized that I'd already been living like this for years. There was still hope. Since then, I've been getting out every day, even if I'm in terrible pain. It kind of reminds me that yes, it's bad, but you're still not trapped in your home.

What's most frustrating for me is the regret. I keep feeling like I did something to deserve this, or that I wasted the years when this was less severe or not a factor. Those thoughts only serve to make me upset, though, so I try not to think them anymore. I just have to take every day for what it is, good or bad, and try my best to enjoy life.

I also hate what I've learned since I began to investigate this condition. So many people have it, men and women. Tens of millions. There's so little research into it, however, because the treatment is not likely to be surgically profitable. We're seen as wasted space on the appointment book. Actually, the first specialist I saw last month fired me as a patient because I was 'too emotional,' I suspect as an excuse for just not having to deal with me.

[NJmaverick]

28. I feel for you

Hang in there. :hug:

[Cabcere]

30. I am so sorry sweetie

:hug: Blood disorders SUCK. x( Mine isn't even that serious, but to some degree I understand your frustration, and you know I wish you all the best. :pals: Sending thoughts and good vibes your way!

[momto3]

31. I am sorry you are feeling so bad.

let me know if there is anything I can do to help.


Tracy