Not been posting much here because there’s just so much going on in my life right now that requires my focus and concentration. Now that I’m here, there’s so much to share…
I had my appointment with the general surgeon and he was a bit of an ass. I was asking him questions about the different things my physician had suggested to me regarding the mass in my abdomen and he said, as he looked at the computer he was typing on, “So you’re second guessing me already? Do you think you know better than I do? Are you a doctor?” I quickly responded that I wasn’t second guessing him, I wanted to understand the difference between the tests my doctor had initially suggested and then later decided to order. He continued, “Oh yes you are, you’re second guessing me, already.” I just disengaged, I could see there was no reason to continue, the more I tried to explain, the louder he was getting. When I became quiet, he laughed and said, “I’m just joking.” Apparently, he thought it was funny, the first time he was meeting with a patient, to be aggressive and abusive like that… it was a joke!
He immediately decided it was a serious hernia and needed to be repaired soon. He told me I needed the CT scan and that my doctor was wrong in thinking there wasn’t a machine that could accommodate me. He told me about a new facility in the next town over where they could do it. He scheduled it for this week and scheduled a follow up consultation. He told me when he had the results next week we’d meet and he’d show me everything, explain what was happening inside my abdomen and what the best way to repair it would be. He did say that he only wants to do it once, seeing as how he believes my gall bladder surgery from 6 years ago likely contributed to this. The hernia is right behind the scar from that previous surgery. He indicated it probably weakened the abdominal wall and allowed the break through. He also said my acute asthma attack two Winters ago likely contributed, as did my weight gain, as the wall was weakened by being stretched and opened and when I spent three months coughing to the point of gagging, that tore open.
I had the CT scan yesterday. While I only had to be on that hard table for about five minutes, that was enough to do my back in! I couldn’t sit up without help and then had to sit there for a few minutes until I could swing my legs off the table. The technician got me my coat and put it on me, got my cane and purse and walked me out. I had to sit in the lobby for 2 hours waiting for my hubby to finish at work to come and get me. That didn’t do my back any favors either.
Next Wednesday I see the surgeon to plan the surgery. I’m quite concerned. A friend’s father just had surgery to repair a hernia and he was not allowed to lift anything for 5 or 6 weeks. He was told not to cough or sneeze and he didn’t even ride in the car for a couple of weeks after his surgery. We’re going to have a family meeting after I have this consultation and know more about what I should expect, to determine how things are going to get done around our home while I’m incapacitated. I think I’m going to have to call on some friends, something I don’t want to do, but may not have a choice about doing.
Last week the regional coordinator of the organization Parent to Parent of North Central PA called me to update my peer supporter status. I’ve been a peer supporter for some 10 years now, offering my support to other parents whose child(ren) has the same diagnosis as my son or parents that are in need of special education advocacy. She wanted to make sure I was still available to be matched with other parents and that all my contact information remained the same.
She asked me if I would consider starting another support group, as she knew I had started one previously that didn’t work out. I told her I’d been wanting to start one for parents, a group that would provide resources and information to parents about the services that are available in our area. She told me that was too general and it would be hard to get parents to attend if it didn’t have a more direct focus. She told me there is a dire need in this area for an advocacy support group. I shared my background and credentials with her and she asked me to please do this for them. She told me she would help me any way she could. She wanted me to be sure not to try to tackle this endeavor alone, as it is a daunting job setting up and facilitating a support group. She wanted me to create a core group of people who’d work with me.
She matched me with another parent peer supporter who’d started and ran a successful support group so that I’d have someone to mentor me through the process. She offered to post a group flyer, do mailings for me, help me locate a place to meet, secure childcare, refreshments, etc. I told her I had been talking to a friend in the social service field that wanted to do something with parent support also, as well as at least two parents that might be willing to help.
I asked my husband to go through the closets and the shed and see if he could locate my materials from my professional position. He spent this past weekend doing that for me. I set about inventorying everything I have and putting together a list of office supplies I already have.
Parent to Parent needed me to decide on a group name and to create a flyer announcing the start up of the group and advertising for some motivated individuals to participate in an organizational meeting before the planned first meeting in September, later this year.
I’ve been working on a brochure, flyer, group guidelines, meeting sign-in sheets, member profile cards, etc. , as I love the creative aspect of this process. I emailed with the peer supporter I was matched with and answered as many of her questions as I could. I contacted the parents I thought might help me and was very disappointed to learn that one lived too far away to participate though she might help electronically if I needed her to and the other was disillusioned with Parent to Parent as a support group she tried to start didn’t work out either (the regional coordinator has changed since she and I tried to start our support groups), so she didn’t want to get involved, though she said she could use some support.
The friend that works in social service hasn’t managed a support group before and we haven’t had a chance to get together and go over anything yet.
The parent to parent regional coordinator already has an offer from the supervisor of special education in a neighboring school district, to present/speak at my support group once it’s up and running.
I’m fighting becoming overwhelmed by the process, as I know there are so many things that need to be done and I’ve only got three months to do them. Within that three months I’m going to have and be recovering from surgery.
Today I received a letter from the agency that manages my son’s waiver funds that pay for his job coach and habilitation aide. Medicaid, that funds the waiver, wants my son to have an annual physical by June 29, but Medicaid won’t pay for more than one physical in a 365 day period of time, which means he can’t have one completed until June 30 or after. If it’s not completed by June 29 he could lose his waiver funding.
I called the agency and they told me their records said he has to have one by June 14. I told them that was impossible because the doctor’s office said his previous physical was June 29.
I told them I was tired of the stress this whole system causes our family and the fact that their records are never correct. They told me they would look into it and call me back. They called back just a little bit ago and told me I was right and they know the Medicaid system’s rules are idiotic on their face. They said they still have his physical from last year and they can submit it for this year, they are a year ahead with his records, so I can take whatever time I need to get the physical.
I was trying to reduce stress… but holy cow, there are so many outside factors having an affect on our lives, on me, on my stress level…
I’m thinking I need a really good cry! It’s just all too much, the physical pain, the stress, blah. blah, blah…. UGH!