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Guest · Posted: Wed Dec 12, 2007 8:00 am Post subject: Heidi's Life

My name is Heidi Hollister
I am 31 years old (just had my birthday on Dec.8th)
I live in Frisco, Tx (north of Dallas, close to Oklahoma)
I am an only child, and was diagnosed with ehlers danlos syndrome during my pre-teen years. I had some really close friends in high school but as soon as we all graduated and THEY went off to college, that was the end of that. I stayed home since I was sick all the time and TRIED to go to a community college. I took basic courses but never went anywhere beyond that. I just worked at retail stores and lived at home with my parents (and felt like a loser since my friends were doing bigger and better things with their lives), I was just too sick to stay in school or even keep full time work.

My parents never understood me and thought I was just LAZY! Well, luckily I met the man of my dreams when I was 21 and we married when I was 24. We are STILL married and STILL in love. He truly meant he loved me in sickness and in health (poor guy, he didn't get much of the HEALTH part). I have lived so much of my life in the hospital and it wasn't til 3 days ago that they FINALLY realized it was more than my EDS causing my problems. I am bedridden and have been for a few years. My husband (David) works from home (THANK GOD) and takes care of me 24/7. I have no life outside the walls of my home and it gets very depressing sometimes. It is so difficult to even go to the doctor. I feel like I am so secluded from the world and miss having friends, social interaction, or even just someone to laugh with sometimes.

My husband is great but I can't ALWAYS complain to him, ALWAYS talk his ear off, and he works so much on the computer that many times I hate to bother him. I deal with so much guilt and feel like a burden on everyone, I hate it. I am sure David wishes he had a "functioning" or "normal" wife though he NEVER says that or complains. He believes in me, tries to understand what I am going through, and supports me 100%. I just feel like I need FRIENDS to talk to, especially people that experience what I do on a daily basis and feel what I feel. I think it would help me also to feel useful and be able to be there for others when they need support, ya know? I am SO SORRY for this long, boring note. Thank you though for letting me get that off my mind! HUGS to all of you!
Heidi

Nicole · Joined: 25 Oct 2007 Posts: 19 Location: Gulfport, MS

Heidi

We have a few things in common. I am from Gulfport, MS. My family lives in a town called Little Elm and Flowermound, TX. I am 30 also. I have been to Frisco numerous times. Very Happy

I understand how easy it is to get depressed about your situation, but always remember how lucky and blessed you are. You have a excellent husband who is there to help you and there are many other things to be elated about. EMOTIONS really suck though. On top of the medical rollercoaster we are on a emotional rollercoaster as well.
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*Nicole*
POTS, SVT,atrial tachycardia, chronic fatigue, insomnia, NCS, low potassium, lower esophageal rings, IBS, gastroparesis, insomnia, fibromyalgia, and others

Have a blessed and wonderful day!!!! HUGS and LOVE

whitneypaige · Posted: Wed Dec 12, 2007 3:51 pm Post subject:

I'm also an only child.
I had some great friends in high school and that continued until I got sick and stayed in the hospital a lot, they were off doing their thing, at college, working, having kids, getting married, etc...I might have a tiny handful and I rarely keep in touch with them. I don't get to go out much. I pass out and have seizures in public and use wheelchairs when I have to...it's very lonely when the people that were there for you when you weren't like this and now they are mostly gone! I agree with Nicole, the emotions just suck. But I've been trying so hard to overcome the depression and loneliness. Because I live with my parents, still, which they are very protective and ask me every five minutes if I'm okay. My fiance, bless his heart, we were together a year before my symptoms got to the point where I couldn't work or anything. And he's still there for me and I feel really blessed to have him in my life. He's so strong...

We were going to get married....but I'm fighting for disability and I have to help my parents get financially back on their feet before I get married and move out. They question if I'll even be able to take care of myself most days..but it won't be TOO bad because my fiance goes to work @ 6am and usually gets off work @ 2pm and I'm usually still in bed haha. Razz

I think it would work out. I could keep my daily med container and a drink by my bed so I wouldn't have to get up for that. And maybe something simple like a box of donuts so I could have a donut or two for breakfast so I won't risk getting up and passing out to fix breakfast. Razz

I don't know. I've just been trying to think of ways to MAKE it work because I am so ready to marry him and get out of my parents house. Mad

I am so sorry your parents thought you were lazy.
I think a lot of people thought I was lazy at first, too! My parents never said it and I don't think they thought I was but I know a lot of people thought it was all in my head or that I was lazy. A lot of doctors told me that and pissed me off.

That is so sweet about you and your husband. He sounds just wonderful! And it's so GREAT that he gets to work from home!!! Very Happy

I dread my doctor visits, too. I don't get out a lot and I hate being around people that are all dressed up and I'm thinkin', jeez you are just here to see a doctor not to go to a dance! I don't get it. I always just show up in my PJs and do the best I can with my make up. That's all I can do. Sometimes my mom has to help bathe me and clothe me. Like I'm a kid again. Sad

It's awful. But it's not an everyday thing and for you to have to be bedridden breaks my heart. I pray that they find some meds for you that can make you more peppy in some way.

I rarely see my family...I didn't get to see them for Thanksgiving. Much less any other day of the year RARELY. And I feel like....I know they understand but in a lot of ways they don't at the same time. I wish like not so great of a place I could go out and see my family, my old friends....if I could I WOULD. I just hope they know that.

Honey, I feel the same way with the "complaining". But seriously, we go through so MUCH! How can we not vent? Preston says he understands but like you....I do feel like a burden and I just try to act "ok" sometimes so I don't put so much on him and I do it to my parents, too. That's another reason why I'm glad for myspace...because I can talk to others that understand AND I write in my blog a lot. It's like a journal. And I write in that thing a TON just to get everything out.

Yeah, I so understand what you mean. I cry to my fiance a lot...telling him I know he wished I was "normal" and I feel like I'm holding him back but he never ONCE has complained or treated me any different!! We have some amazing guys in our life. That is something to be happy about and thankful for, for sure! Very Happy

Well, you have friends now! Smile

Definitely. You just contact any of us at ANY time! We are a family sweetie!

Don't you apologize for a long note. Babydoll, I'm the queen of rambling. I think we'll get along just great!!! haha! Smile

You keep your head held high and you get in touch with any of us at anytime! I mean it, too! Wink

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Whitney Paige

Dysautonomia, Mitral Valve Prolapse, SVT, Fibromyalgia, Non-Epileptic Seizures, Acid Reflux Disease, Chronic Constipation, Insomnia, Sleep Paralysis, and much more!