Update On Rehab And Living Along Anxiety...

[Becia]

Well, nearly a month has passed since I came to the in patient rehabilitation for my hips, and it's about time for me to leave. In the middle of my stay, my name came up on one of the housing wait lists I've been on for a few months, and I will be leaving to be in my own apartment.

While I'm excited about having my own place, which will be better customized for my needs (aka, handicapped accessible, wider doors to fit a wheelchair, no carpet to fight, bathroom accessible better, etc), I'm a bit nervous. My flares vary in degree, with really this last one being one of the most severe I've had since diagnosis (was bed bound by symptoms, as well as injuring my hips severely as a result of passing out and seizing), and I've been really fortunate that I've lived with friends who said they were willing to help me however they can, and were there. This is now changing, I'm gonna be on the other side of town now, kinda separated from the world that I know

I never had anxiety before, but this scenario has me seriously wondering if I'm ready to be alone. I feel Ike a little child right now, literally staying in tears because of fears. What if I pass out, what if I have a seizure, what if I have a severe problem and cannot get ahold of anyone? I've had friends tell me "call me, I'm there for you", and lately when I've needed help, they haven't been anywhere to be found. The difference here and there is at least with my friends, I knew they were coming home, would be there, and it would be okay. They would try to stop me from pushing myself too far, offered help, and now... I don't have a choice but to be risky on days I'm lucky to get out of bed, because there is no help.

In the middle of this insane situation, the orthopedist I've begun seeing because of the hip situation, highly suspects I've torn ligaments/cartilage in my hips from the sprains, and highly suspects EDS as well based on how super flexible I am. He has told me surgery wouldn't help me if this was the case, because the eds would just continue to let my joints sublux and come looser and looser, thus not holding things in place. He's asking for a genetics consult with OSU to confirm, so I'm waiting on that. He showed me the X-rays and was showing me some measurements in the joint that are usually 25 degrees max...mine are 31 on the right, and 42 in the left, which was a bit freaky.

While I've been building up my endurance here with physical therapy and occupational therapy, my standing time is still no more than 2 minutes if I'm feeling decent (min symptoms, med side effects, etc.) less if I'm not (which can be from exhaustion because I'm not getting enough rest here, illness, etc.). While I'm trying to safeguard myself and be ultra prepared, I still have that "what if" in the back of my head.

Everyone keeps telling me I should be excited about this, but I'm really struggling with it. I just needed to rant to people who understand... I truly hope this new phase of life works with me somehow, because I feel like I have no place to fall back on if it doesn't.

[Katybug]

I do understand. It was a really hard decision when I moved back to my house from my mom's. I wasn't sure I was ready but I decided to try and it has worked out. I don't have seizures, so that would worry me. But, have you considered getting a LifeAlert installed in your apartment? That way if something really bad happens, you just hit the button on either a bracelet or pendant and they will send paramedics. I think there's a company that even has a system like this that you can use anywhere now because it has GPS in it.

[Becia]

That has been a thought, but right now I'm living on $115 disability assistance from the state, so cost could be a factor. I think once I get to the other apartment, which is more located to people, place, etc, I may not be as afraid, as I know I have a friend who is two blocks from the apartment there. I do have home health, occupational therapy, physical therapy, possibly skilled nursing coming out, as well as possibly an assistance group from our local aid office that can help with household chores and such, but there is a lot of time I will be alone it feels.

I am a yoyo it seems, and my doctors agree that the best I can do is try, and if it fails, then it's okay to come back here and regain some strength. I do not want to be back here, it's been very hard mentally on me with literally, all the death, illness, triggers. Like I told the doctor today, I feel like in a lot of ways I'm too healthy to be here, but maybe not healthy enough to manage certain things "on the outside". Maybe this is anxiety then? I never feel anxious that I know of, but maybe this is how it feels? I'm pretty much to my own devices here, but do need help going places, etc.

All I know is I want this stress gone. I want to shave my legs (it's been way too long since they've seen a razor or a bottle of Nair, lol). I want to Unbox my new mixer and make bread. Maybe when I get in and get settled, it will do better? I don't know. Don't know until I try. I'm trying to come up with anything I can think of that might help me when I get to my new place, whether it's a barstool to make sure I'm at the right height for the counters, finding a couch to make sure I can lay down somewhere else other than a bed, and figuring out a major grocery shopping trip to make sure once I'm there, I have everything I need to make something to eat, no matter how I feel.

[Becia]

But an interesting tidbit about this place... My rent is only $2.00 a month because of my income, and my utilities are currently only $20 a month because of my income. I won't have much, like I'm not sure I can do high speed internet there, but I have cell phone service, and I can tether to log in here. And it's right next to the high school, so I can listen and watch my niece in the marching band every day at practice.

Little blessings. I'm a total band nerd, played the same instrument she is playing (percussion), and while I can't make it to the games this year, I can at least get to watch her practice.

[gjensen]

Becia, I think that I would have mixed emotions. I would like the idea of working towards some independence. I would also be nervous about it.

I agree with the LifeAlert suggestion, but a cell phone is the next best thing.

Just keep in mind that this may end up a positive development. Even if it takes some time to get adjusted.

[Raisin]

I think that all of the things you are feeling are normal for the circumstance. I am wondering if some of the folks from your church might be of assistance (didn't you go to Cedar Point with them? I may be incorrect on this and if I am I apologize. ). I am glad you will have some folks coming in re healthcare. Who knows? You may be like, "Hey, get out of here. I need to make my bread". You are going through some changes. Even positive changes can bring anxiety. Maybe it is worth a shot. I hope you let us know.

[blueskies]

Hi becia

Anxiety is normal for anyone moving to a new home. Swinging between the possible negatives and positives is also normal. I hope your new home becomes your haven.

Blue

[Becia]

We went to kings Island, and they are being awesome in helping me with everything. One of the ministers has been gathering items from a wish list for me, and found a couch, table and chairs I needed today. I'm overwhelmed by how much she is helping me out, especially when everyone is so busy and it's hard to coordinate schedules.

By the timing that I'm seeing, we are hoping to move me this weekend, and discharge is on Monday. I had my last pt and ot sessions this afternoon, so I'm basically free to do what I need to do. Still nervous, as I passed out several times today (symptomatic because my feet have been down a lot, with very little rest/reprieve from hectic schedule), and my body is showing signs of a crash impending. Hoping my IV treatment tonight will help boost me a bit, as well as getting some good sleep (which is nearly impossible when you have a roommate that requires someone to get her up to use the bathroom every 2 or so hours... She doesn't drink a lot and she constantly goes, I drink more than she does and I'm not up nearly as much, lol).

Time will tell. I just don't Handle change very well, and this is a big, big change since my diagnosis. I've been alone for a couple weeks at a time with my friends, house sitting, but the difference there is I knew they were coming back home. This time, I won't have that. And they will be about 10 miles the opposite direction. While I'm glad to be temporarily nearby to see my niece at school everyday (right next to the high school), I'm just a bit nervous of how she is gonna be if she find me on the floor with an injury again.

Speaking of injury, results of my MRI were good, no tears or anything,but everything holding my joints in place is so stretched that it doesn't support the joint staying in place. We are trying more physical therapy on an outpatient basis in home, to try and strengthen around it, and am in line for genetic testing for any other connective tissue issues, but doctor is pretty sure this is EDS. His advice was "don't bend like that!" And for me to be as careful as possible. I'm going home with a new wheelchair, and they are also sending me a walker home if I feel like using that for any short distances, just as a precaution.

I got equated to a human gumby doll today, lol. A stressed out way too bendy chick who could really use a margarita if her body and meds would allow.

[Katybug]

Can the doc get you with the right people to fit you for braces for your hips? They won't 100% guarantee no more dislocations but they will help stabilize your hips in conjunction with pt.

[Becia]

He does referrals to a brace guy, but wanted to try 6more weeks of pt 3time a week to see if we can strengthen them more. My thing is for me to feel any resistance to my muscles, I literally have to contort my body in weird positions to get any feel in them. He promptly told me to stop stretching, I don't need to stretch.... But I gotta warm my body somehow, to avoid muscle strain, I would think.

He concures with the rehab sending me home with a better wheelchair, and with a wheeled walker for short distances as I feel stable enough to do so. I also got my insurance approval for my genetics consult too, so that's coming up. I guess braces are the next step if there isn't significant improvement through the pt.

[Becia]

My pt here mentioned using compression wear, like what runners wear, for helping at least tricking my brain into feeling they are better supported... I don't know if I could do two types of compression garments, one for my legs, and another for my hips. Very uncomfortable as it is, lol,

[corina]

Becia, I can imagine the fears you must have. I hope things will work out well for you, sending good thoughts!

[kay1964]

Becia, sending lots of concern thoughts and prayers your way.

[Raisin]

Yes! Kings Island! I'm from Ohio too. I try to wear Spanx along with my thigh high compression socks. Sometimes it is ok. Sometimes I can't due to abdominal pain. Neuro suggested I get the Spanx that go all the way up to my rib cage, when I wear everything, I feel like I am wrapped in a rubber band. But, no panty lines! Hahahaha! Sometimes I crack myself up....... Prayers for you! Let us know!

[Becia]

I want to go to Cedar Point someday, lol. We talked about doing that late in the summer, time just crept away from us. I love roller coasters, just can't do them anymore, but I enjoy the shows, people watching, etc.

I've never used spanx, I only have my compression stockings and they are killer some days. I'm a bit leery adding more to it, but I gotta do something about these hips. My roommate here at the rehab fell again this morning, and I nearly disclocated a couple joints getting to the nurses station because they weren't answering the call lights. I think everything is back in place now, and thank goodness they have me in some decent pain control here. I'm a bit terrified that pain control won't be there when I leave.

And hahahahaha, yeah, no panty lines and I bet you feel all skinny with all that compressions! You're a nut, lol.

[Becia]

Moved out of the rehab facility to my apartment today. It's been a very stress filled day, but I got the majority of the boxes my roommate had brought over previously, put away in some places where it won't interfere with my wheelchair, or make me trip over them. Have a new bed, and need to create a footboard for it to place it on my risers to have it with the head elevated, so sleeping flat for the first time in about 8 months, which is weird.

It's obvious I'm still in a flare and the extra energy I expended at trying to make this place habitable for me, has really comeback to kick my tail. Tomorrow I have a doctors appt, followed by grocery shopping and then choir practice, but I think once I get groceries in here, and maybe a microwave, maybe I will feel more at home, and can let myself rest better.

[Raisin]

You are there! Yay! Dont worry if you still experience some big emotions. It's ok. I always found that a big cry lowers the anxiety hormones anyway. One thing I did when I was scared was that I carried a list of people that were routing for me in my pocket. Then I didn't feel as lonely. I also recommend a good soft stuffed animal. Hang in there! Keep us apprised!

[Becia]

We discovered I cry for about four hours straight when I take a Xanax. It's supposed to relax me, well it did to the point of tears.

Also realizing how much around me triggers me, no doubt from being extra sensitive. The toilet flushes and startles me, the shower head emitted this horrible high pitch scream, the floors are painfully cold to my sensitive feet, there's too much light with the white walls... But trying to brace myself for the triggers and such.

Having first night jitters, just talked to a friend for about two hours to relax, moved the computer into bedroom and watching movies while making my grocery list. This bed is so super comfy, like a big hug, lol... I could use a hug right now.

[Raisin]

I hate screechy showers! I LOVE comfy beds. We spend so much time in them, it's nice to have a good one, eh? Well, try to surround yourself with everything calming and things that make you smile. Wouldn't it be awesome if we could all come over and drink some tea with you? We could all lay on the floor and just signal somehow that we have something to say. Lol!

[Becia]

Got told today to get a Life Alert system since I'm alone, in case my phone isn't near me when I have an issue. I've had a few in the short time I've been here, no doubt from just being exhausted the day after I've moved everything in and didn't rest enough. Trying to pace myself is insane,

And lol, at the floor comment... We could just moan and speak POTSy-ese.

And this bed totally rocks. I've never had a pillowtop before, I can't believe this is what I was missing. Even though I'm not at the angle I'm accustomed to sleeping at, the support is amazing.

[Becia]

I have to say at the life alert system, I laughed... The doctor made the point of "you can't just lay there on the floor, you've fallen and you can't get up!" I couldn't help myself, I nearly spit water imagining the senario of me pushing this button and having to explain that I'm really fine, just can't get upright because I'm POTSy... Sure will have some blank stares.

[Raisin]

Yeah. My cousin said we should all have a support group where we are all in motorized recliners and when we need to speak, we can just raise our heads, speak, and then lower back down. Hahahaha!

I am glad you are getting the life alert. I think it will give you some added security. You don't have to have the apt. Set up in two days, right? Pace yourself and glug down your water. Rome was not built in a day and neither does your apt. need to be built in a day. Even God had to rest on The seventh day. Heeheehee hee. Ok,....I'm cracking myself up again.

Long live the pillow top!

[Katybug]

Glad you're in your own place. Raisin is right, it doesn't all have to be perfect immediately. Really, the one thing you've got when you're in our shoes is pllllenty of time. Lol! I hate when things are out of place or not organized but I've had to learn to tone down my enthusiasm for perfection and settle for one little battle toward perfection each day. Eventually, it all gets done. Take it easy so you can enjoy your independence instead of making yourself crash.

[looneymom]

Hi Becia

Sounds like good things are happening. Hang in there! Speaking of compression, what about the biker's shorts? In a few weeks, I am going to try this with my son and see if he can tolerate it. I used to be a runner and had running tights for cold weather. Believe it or not I miss those things because they kept me warm. Thinking about getting some more because it's supposed to be a very cold winter this year in Oklahoma. BTW the Life alert sounds like a good thing for you. Enjoy your new freedoms and apartment life.

[blueskies]

The buzzer in my apartment (I live in a security building) goes off snd I leap every single time - it feels a lot like an electric shock. I keep gently reminding my husband that perhaps he could replace it with another with a gentlersound. I came close to ripping it off the wall the other day but instead used my energy just getting to the **** thing to let someone in.

Becia, no doubt you have probably thought about it but perhaps online supermarketing is available where you live? I use it, and it relieves me of the pressure of grocery shopping. I order it online, pay by card online or when they deliver, and the delivery people carry it up two flights of stairs, into my appartment, and through to the kitchen for me. Then I get to complain about having to unpack it - at first I'd forget items I needed or accidently order the wrong amounts but now, some years on, I get it right 99% off the time. Now I can log into the site and do my shopping and log out in 10 minutes or so. It did take me a lot longer when I first started, though. My local pharmacy will also deliver my meds and stuff - although mostly I go out on a good day to pick them up.

blue