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View Full Version : Nobody to talk to, have to stay "positive"



sheribydesign@msn.com
11-12-2009, 08:15 AM
Well I'm positive I have nobody to talk to. I'm positive that my hub hates that I'm sick. I'm positive that new doc here in FL is not as good as my doc
in Cali, but can't go back. I'm posiitive that I miss working. I'm positive that I don't know who to fix me yet. I'm positive that since I'm so blanking sick that I can't leave my hub (no income). Can't find a support group near me. I'm also positive that my brain, the one thing I could always count on is fading fast and it terrifies me.

rob
11-12-2009, 08:32 AM
Hello Sher,

It really is hard to be not only sick, but in a new unfamiliar place, and in a situation where you feel trapped too. I was diagnosed wth SLE in 2004. I have been where you are now. It took time, but I got my situation, and my Lupus under control. It took time, effort, and alot of tears, but it all fell into place finally.

Try to tackle the problems one at a time, and use your "foggy" head to the best of your ability on the most important issue first-your health, as in getting a Dr. and Rheumo you can trust. As far as a support group, most of us can't find one remotely close to us. But, we have this place, and it really can help. It's a real support group, we just don't meet face to face.

Welcome to our group, and please, make yourself at home. And have hope, things can get better.

Rob
Moderator

debbie-b
11-12-2009, 09:05 AM
Well I'm positive I have nobody to talk to. I'm positive that my hub hates that I'm sick. I'm positive that new doc here in FL is not as good as my doc
in Cali, but can't go back. I'm posiitive that I miss working. I'm positive that I don't know who to fix me yet. I'm positive that since I'm so blanking sick that I can't leave my hub (no income). Can't find a support group near me. I'm also positive that my brain, the one thing I could always count on is fading fast and it terrifies me.

We have all been in your situation or at least an a simular one. It took me 3 years to find a good rheumy, my kids and grandkids live in Texas ( we live in NY), the reason I quoted your post is, my brain fog is so bad, that I don't remember, what I am answering to. So you see, we have alot in common, but most important thing we have in common, is this great forum. You will find friends you can talk to, day or night, people who understand what you are going through. Because we all going through pretty much the same thing.
Don't be discouraged, we are glad to have you in our family.

Debbie

sheribydesign@msn.com
11-12-2009, 09:08 AM
Thanks Rob, your reply really does help me not to feel alone. Sher

magistramarla
11-12-2009, 10:26 AM
Hi Sheri,
Welcome to the group! As Rob and Debbie told you, WHL is a great support group. We're all here if you need support, information or just need to vent.
Like you, I've also just moved a long distance - from Texas to California. I had just found a great rheumy in San Antonio, so I was a bit disgusted to be searching again, too. I asked for recommendations on this board and on another for Avascular Necrosis. Sure enough, one of the ladies on the AVN site lives in Monterey, and guided me to the best rheumy in town. So - do the same - ask lots of people for recommendations, and get second, third, .or even tenth opinions until you find the one that you "click" with.
I know that it is tough getting used to new surroundings. I have bad days in which I just want my house, my job, my car and my family back! Our kids are all adults and we've all spread out across the country, which can be hard. I had to give up my teaching job, and I do miss my classroom and my kids. We downsized from a 5 bedroom brick home that we own to renting a duplex in military housing - what a change! Last but not least, I gave my beloved car, which I had driven since it was new, to my son who regularly wrecks cars. We bought a Prius, and we're only using one car while living in Ca. Every time I talk to my son, I ask him if my car is still in one piece!
I know that it is difficult, but get yourself out there and try to find people around you with interests like yours. If you can't work full-time any more, perhaps you can find a part-time position, or even volunteer work. I've joined the Officers' Wives' Club here, even though I happen to be old enough to be the mother of most of the members. I don't have too much in common with those girls, but I'm persistent, and I keep going to their events, just to get out of the house and see someone other than my hubby and the cats.
Good luck in Fla. Keep in touch with us here and let us know how you're doing. We're here, and we'll listen - we promise!
Gentle Hugs,
Marla

Bonita
11-12-2009, 10:30 AM
I think we all can feel your pain and frustration and send our love and bestt wishes that things come to a place that is better for you. No one understands what we go through but these people in this web site who are there for you no matter what. Hang in there and love and prayers Bonita

tiggerlishus - Heidi
11-12-2009, 02:33 PM
yes just comnig to back what every one else is saying i live in uk and this is the best group i found the most postive and nearest cause it at end of finger tips! 24 seven with lots of postivity so huge warm welcome to our group and hope thing will begin to look on the up once your settle they say moving is a stressful as divorce so like some one brain fog stops me from remembering who said take it one step at time make sure your settled in home find a good doc and other will fall in to place slowly untill then we're here xxx

Angel Oliver
11-12-2009, 03:30 PM
Welcome to the forum and we so understand and hear you!! So glad you found us all.Take it slow and everyone here will help you through it all.

Lots of love
Amanda.xxxx

mountaindreamer
11-12-2009, 07:53 PM
hi sheri. I hope you can feel the support coming from our family here at whl. I know it does not help you to know that we have all been exactly where you are, but the good thing is that we can help you get past this phase, and into a safe place. If you have not read it, the spoon theory is an excellent tool that will help you and your hubby understand what you experience each day. I will find the link, and get back to you......
the web site is: www.butyoudontlooksick.com/na...SpoonTheory.pdf. .....Good luck, like others said, take it slowly, everything will be ok.

Serenity81
11-13-2009, 06:25 AM
I have to say, that Phyllis having recommended "The Spoon Theory" was exactly what I was going to say! It's a fantastic analogy that has done wonders for loved ones around me being able to get a glimpse of what we deal with daily. This diseases, as with any chronic illness can put a huge strain on relationships of all kinds, especially marriages. Hang in there, and like everyone else said, come here when you need some love and support from those who understand firsthand.

Also, have you and your husband considered counseling at all? Sometimes, having that objective person there can be a big help.

BonusMom
11-13-2009, 07:20 AM
I'm sorry that you're feeling so alone, but you've found the best support group here at WHL. I was only diagnosed last year and this was where I turned when my PCP was doubting my rheumy's diagnosis (she's eating crow now), when I'm frustrated because my DH seems to have no clue what I'm dealing with or when I just need a cyber hug.

I live in the same community as I was born and raised so I've not had to ever deal with starting over in a new community, much less a new state!. My children are grown (my baby just started college) and my parents moved out of state a few years ago. Nobody wants to hear how I feel physically or emotionally-let's just pretend everything is "normal" when it's clearly not.

The insecurity of not having my "own" money from having a job/career has kept me in the work force. I don't want to feel like I'm trapped in the event my marriage unravels. Are you eligible for SSDI? Perhaps you could apply so that you will have the means with which to support yourself, if necessary. Plus, your having your own income might help with the feeling of despair and the feeling of not having choices due to economic reasons.

You don't mention if you're taking meds or how long you've been dx with SLE. Initially, I fought brain fog something terrible. I changed work units a year ago last June and couldn't figure out why I wasnt grasping new concepts. My brain seemed to short circuit, leaving me very frustrated and scared about my future. Plaquenil has been most helpful for my brain fog, yet I still have some trouble connecting the dots at times.
Hang in there because you've found a lifeline when you found WHL. It really has helped me with the emotional support that I craved and answers to questions about all the new things I was experiencing medically.

Welcome aboard!

sheribydesign@msn.com
11-13-2009, 08:55 PM
thank you to everyone who has replied and to the ones who read and simpathizezed (sp?) cant spell anymore. I used to be a successful commercial architect for 20 + years. Now I am sickly waitng on SSDI. thanks for validating me. sher