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For a couple of weeks now, I’ve been dealing with some serious chronic pain. The change in the weather has brought about a lot of stiffness in my joints. My knees have been seriously swollen, my lower legs, ankles and feet always are swollen with edema.

I was walking down the ramp to take “Kodi” outside a couple of months ago and something in the back of my left knee ‘popped’. It hurt terribly. I hobbled around on it with that intense pain hanging on for six weeks or more. When that pain started to recede I started to experience pain in the arch and heel of my right foot and after a week of that pain I’ve now got pain going right up the back of my calf into the back of my right knee.

I’m having a horrible time walking around the house, sleeping, sitting, even using my power chair is painful without the leg rests.

I think some of the pain is the result of my new recliner. The cushion settled and shifted and once I’ve sat in this chair for any period of time, I can hardly get up. Once I am able to stand up, I have a lot of trouble taking a first step. I have lived with nerve damage and nerve pain for more than a decade.

I’ve had to begin taking prescription pain medication just so I can sleep. The pain medication makes me dizzy and nauseous after taking it, so often the following day is a bit hazy.

Along with this body pain I’ve had a Migraine headache now for the better part of a week. I’ve been terribly emotional, crying over everything and been experiencing hot flashes a couple of times a day. Menopause is catching up to me!

I’ve been trying to find ways to ‘de-stress’ and to shut off my mind, to distract myself as much as I can from stressful situations and thoughts.

Unfortunately this has been a difficult time for doing that, as my son has been very stressed for quite a while now. He perseverates on things, when he’s stressed and worrying. He starts on Friday worrying and talking about whether his ‘aide’ will be on time Monday morning. He asks me over and over again, all weekend long, if she’ll call on time, show up on time or have an attitude.

I’ve been asking him to please not worry about it so much, that talking about it all weekend long, worrying about it, isn’t going to change how things will go on Monday morning. I’ve been telling him that we have to wait until Monday, see what happens and then deal with whatever Monday brings us. I’ve asked him to try not to talk about it and to not worry so much. His response to me has been, “I have to. I need to talk about it.” What do I do with that? If he needs to talk about it I can’t tell him to stuff his feelings and not discuss it, that goes against everything I believe and know about emotional health.

I’m trying to listen, but to continue reassuring him that we won’t know until Monday and can’t do anything about what we don’t know.

I finally decided that maybe we should have a meeting with the service provider and his Support Coordinator who was due to visit with him in October, so we thought perhaps we could take care of two things at once, by having a meeting, like we had been doing every month, to make sure we’re all on the same page, talk about my son’s anxiety and determine if there are changes we should make to his services.

I had made a change to his waiver allocations in July, so he would have more hours of service available to him for Job Coaching, keeping his Habilitation Services the same. I was hoping that the additional hours could be used to do some job observations, so he could see some other jobs, other than what he’s familiar with doing, so he would better understand when we talked about other fields and positions.

My son has volunteered at a local hospital in housekeeping while in High School, then, after graduating he volunteered in laundry at a local hotel. He volunteered for a short time at a Salvation Army store, stocking shelves. He’s now volunteering in the ‘central supply’ department of a local hospital putting stickers on saline bags, counting and repacking specimen cups, etc.

Only one of the jobs he’s done has had the potential to become a paying position, but the hotel changed their mind about plans they had that would have allowed him to have a part-time position with them.

Typically when we talk to him about what he might like to do for work, he doesn’t know. If you ask him about this or that job he says no. I realized, I don’t think he understands what we’re talking about when we say something like ‘food service’ for example. I asked to have more hours available, so we could add an outing to his week, and use that time to go into the community and observe other jobs he’s not been exposed to, to see if there might be something else he’d be interested in, expand the possibilities his Job Coach could consider, hopefully making it easier to find him a paying position.

I’m concerned that we’re not on the same page. Since getting those extra hours, he’s been exposed to sorting surgical scrubs and observing ‘food service’ in a hospital, he’s gone to a different hotel and observed laundry operations, and they’ve gone to the service provider’s office where they worked on ‘social greetings’ and went over his community notebook. His Job Coach indicated to me that an attempt was made to observe laundry at two different Nursing homes that declined to allow them to do so and she’s considering yet another Nursing/Assisted Living home.

I never intended for them to observe more laundry operations, he’s done that, knows what that’s about… but there are other jobs in the community that he doesn’t have any idea about. I never intended for those hours to be used doing anything in the office. Rather than wasting time observing what he’s familiar with or sitting in the office, it would make more sense to not use those hours, if he’s not going to observe positions he’s unfamiliar with, so that if he would be offered a job, they would have them ‘in the bank’ to use for actual Job Coaching in a paying position.

Our Support Coordinator thought a meeting was a good idea, so she sent out an email requesting it. The only response was that the day we opted for, so that he wouldn’t have to sacrifice his services, was not going to work, and that after 5 years of meetings being held at our home, they wanted to have the meeting at their office or at the county office.

Ok…  My power chair is an extra wide body and hardly fits on the bus, it’s very difficult to get it around the corner to the seating aisle, especially without taking the leg rests off. I don’t use the bus because of the hassle and my fear that something will happen to my chair in the process and leave me without wheels under my butt. If I were to use the transportation van, it would cost me a fortune, because it’s not a doctor’s appointment, so I would have to pay out of pocket, as would my son. We have one car and my husband works two jobs, so he has the car. What options does that leave us?

These services are supposed to be supports for the individual and the family. They are supposed to ‘help.’  Does that sound ‘supportive’ to anyone else?

And so… stress continues to mount, which will undoubtedly continue to negatively impact my physical health and my son will continue to be “done!” as he’s expressed for quite a while now, though he keeps plugging away because he knows I want him to do so.

Why must EVERYTHING be a struggle? When are the challenges enough? When do we have enough to deal and cope with?