Holiday Season

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In A Charlie Brown Christmas, Charlie Brown says to Linus… “I think there must be something wrong with me, Linus. Christmas is coming, but I’m not happy. I don’t feel the way I’m supposed to feel.” I’d change that slightly and say the holiday season is here, but I’m not happy, I don’t feel the way I’m supposed to feel.

The holidays are usually a source of excitement for me, starting with Halloween. I love decorating, the jack-o-lanterns, picking out candy to give to trick or treaters, etc. I love getting the ingredients from the store for Thanksgiving dinner, bringing in the lights to check out for Christmas decorating, inside and out. It’s all exciting, there’s a lot of anticipation, but none this year.

The last couple of Halloweens we’ve only had two or three trick or treaters. I had been looking forward to this Halloween, as I was anxious to see KD’s costume, to dress up for him, even if we got no other kids, but since his mother was my son’s SSP and she quit, her sister attacked me on Facebook, her father won’t talk to us after a 37 year friendship, there isn’t much to look forward to. All of my Halloween/Autumn lights were no good this year, had to buy new and couldn’t find what we wanted anywhere, so we made do with white twinkle lights, cut back on decorations.

The last couple Thanksgivings we had our friend of 37 years over for Thanksgiving dinner, his daughter, the former SSP had come last year and I think one other time. Obviously they won’t be coming this year, it will just be us.

This is the first holiday season without my husband’s mother. She really never participated in holidays with us, only two or three times in the 37 years we’ve been married, but it’s the idea that she’s no longer here, there are no more opportunities to convince her to share holidays with us.

This is the second holiday season without my best friend of 43 years. I’ve spent a year wanting to talk to her, opening up her facebook messenger to chat with her, update her on something happening in my life, to find out how she’s doing.

This year, there’s a significant rift between us and our neighbor over the fence and her asparagus plants. Our friends who bred our dog moved an hour away, so visiting them is not something we are able to do. We’ve only been to their house once since they moved.

There are a couple friends/relatives who needed us when they were going through hard times, but now they aren’t too interested in us anymore.

I just can’t get into the holiday spirit, as hard as I try. Christmas shopping is terribly difficult, as my husband is the only one of us who ever wants anything, and we really don’t have the money to spend, aside from the fact that shelves are bare everywhere because of shipping being backed up.

I had a huge meltdown last Thursday, as the riding mower wouldn’t start, I push mowed the whole backyard and suffered terrible pain as a result. It just feels as if nothing is going well, certainly not as it has in the past. I’m feeling very much alone, very much disposed of, as if I have no (or aren’t permitted to have) feelings. I’m tired, worn out, in terrible pain, so very limited in what I can do and enjoy. I feel as though I’m living in fear a lot of the time, fear of loneliness, fear of increasing pain, fear of loss of mobility, fear that I will do something completely innocent and normal but hurt myself. I fear not being able to take care of my dog, to simply walk her. I feel as if I’m just waiting for the next setback.

A person I was once close to used to call me “Chuck” in reference to Charlie Brown. I never understood why she did that, but as I get older, I certainly identify with Charlie Brown.

Blindsided… Still Struggling

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Every day my son greets me in the morning and begins talking about his former Support Service Professional (SSP) quitting and how will we get things back on track. This is virtually the only topic of conversation from him since it happened two weeks ago. It’s hard to move on when he’s perseverating on what happened. He keeps telling me he needs to vent. I understand that and I understand that perseverating on traumatic events is common for his diagnosis. Understanding it doesn’t make it easier for me to cope with how it prevents me from moving on.

One of the things I’ve heard before, as well as this time, that is troubling to me, is this idea that if someone hurts you because doing so allows them to have “another opportunity to grow and have a better lifestyle for my family” that negates the damage their choice does to you and your right to acknowledge it.

I was chastised for not “being happy for” the former SSP, suggesting that it was wrong of me to be concerned about how her choices impacted my child and family. She is doing what’s best for her family, but it’s wrong of me to think about my family?

I’m sorry, she is not a priority over my son and my family.

I spent about two years listening to her complain about how her family members don’t make her a priority. Her sister doesn’t make time for her when she wants, doesn’t do holidays with her family, only wants her when she needs a ride somewhere; her father promised to help her, but complains about her not letting him have any time to himself, wants to have a life of his own, doesn’t answer or return her calls or texts, hangs up on her, etc. She was constantly complaining about health issues, showing up obviously not having slept the night before, complaining about her roommate, her brother’s kids whom she volunteered to take in temporarily. After a while it felt as if she was just looking for sympathy. A lot of her issues were self-made, or because she wasn’t getting her way.

My son had to hear about all of that. I tried to be supportive, as a lot of what she described sounded like my own family’s issues. Oddly enough, when I told her what she was telling me really made me question her father’s honesty, the person he’d always shown himself to be, she’d tell me they talked and everything was okay, she’d try to walk back the things she’d told me.

She’d begun having issues at my son’s volunteer opportunity, not wanting to wear her mask appropriately, being overheated and vomiting almost daily, having to leave him to use the bathroom or go outside to get fresh air. I tried to be sympathetic and suggest some ways to mitigate those issues, even when the volunteer coordinator called to complain about her attitude and behavior.

I feel as if I tried very hard to be understanding, empathetic, but ending my son’s services and causing him distress is where I draw the line. He’s my priority, not his SSP, not his SSP’s family.

Her father had been a friend of ours for close to 38 years and when I hired her he said he wanted to know nothing about her job, how it was working out, etc., he wanted left out of it because he didn’t want it to damage our friendship… he’s not spoken to either my husband or myself since returning his daughter’s house key. I’d really thought he’d contact my husband, if not me, to let him know he wasn’t happy with his daughter’s behavior and was sorry it hurt us. Instead, he’s not even communicating on Facebook as he always had, no private messages, no comments, nothing.

Once again, it appears that after losing an SSP we have lost a valued friendship.

Here We Go Again… Blindsided

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Once again my son’s Support Service Professional (SSP) has quit, with no warning. So we’re back to finding a new SSP so my son can continue his waiver services.

Friday evening I checked my email to find an email with no subject from this person, to the agency we use for services. She informed them she was resigning from her position effective immediately as she found “another opportunity to grow and have a better lifestyle for my family.” I’d been copied on the email. No phone call, text, private message. She’d told me she was having an interview, but had only ever talked about finding another client to work with on the days she didn’t work with my son. I never imagined she’d quit, everything she’d said preceding this email had indicated her intention to continue working with my son.

My son, upon learning about the email, just kept asking me, “Are you serious?” He broke down, saying “I’m screwed, what are we going to do now?” I cried, for the better part of an hour, then called a friend and vented to her, crying again. This is such a stressful process. It’s been explained to me that there is a time limit on how long we have to replace staff, as services must be utilized, or someone on the waiting list can be given your “slot.”

I immediately went on Facebook and posted the position, as most of my friends there are either parents or family members of people with disabilities, and/or they have disabilities or chronic illnesses themselves. Many work within this field or have in the past and still have some contacts. I then posted about his reaction, how I need to stop becoming so invested in these people, caring so much. Following that post I posted about how hard it is to keep my stress, anxiety, depression and panic under control so my son isn’t influenced by it. I talked about how hard this is for us and the threat it carries to his future independence and needs.

Two friends asked me to make the post about the position public, so I did. In short order, our former SSP’s sister commented on that post, because my profile is set to friends only, so she couldn’t see anything else I’d posted. She accused me of doing nothing but being petty and trashing her sister. It’s important to note, I never used her name or the agency’s name.

“She was your friend too and yet when she found a better opportunity for herself and her family instead of being happy for her you trash her on social media?” Apparently I’m expected to put her family above my son’s best interests. I’m not supposed to prioritize my son and my family.

She then went on… “You never allowed her to actually help him. Every time she worked on his behavior deemed uncivil or a poor mannerism you were right there to correct her with some lame excuse.” She claimed that was her job, and that I didn’t want to discourage him. There has never been a time when anyone who has ever worked with my son accused him of uncivil behavior or poor mannerisms. We were instructed by professionals years ago that we should not correct him, but model appropriate behavior and interactions. He’s never had any “behaviors” that required correction. An SSP is not a behavioral specialist. Her role was to support him in the community, volunteering; model appropriate social interactions in public settings; work on fine motor skills and healthy lifestyle.

That her sister knew anything about my son, her sister’s work was a clear violation of HIPAA. A number of people commented on the post immediately that it was a HIPAA violation for her sister to have discussed anything with her, as she’d been directed upon being hired that she could not talk to her friends or family about her client, the work she was doing, etc. As the SSP’s managing employer, it was my responsibility to direct her in her interactions with my son. She never came to me about any “uncivil behaviors or mannerisms”, she did talk to me about him not wearing his glasses, and each time I spoke to him about it both in front of her and after she finished her shift.

It went on and on… she failed, of course, to mention that her sister asked for a raise and I gave her one, raising her pay to the top level available in this position for our budget. She failed to mention that I let her slide when she repeatedly broke agency rules by taking personal phone calls, answering texts and private messages (usually from her sister), that I tolerated babysitter issues, doctor appointments scheduled during work hours, constant health complaints, complaints about the heat and wearing a mask while volunteering with him, non-stop complaints about her family members, particularly her dad and brother, that she’d stood around visiting with former coworkers and friends when out shopping with my son though that was prohibited. We bought her things she needed to help her out, toilet paper, paper towels, facial tissue, sanitary products (some of which she repaid us for). She didn’t mention that I’d provided her sister lunch a number of times, or that I gave her additional hours using companion services. She didn’t mention the dinners we’d invited her to or the presents we got for her son at Christmas, Easter, his birthdays. She didn’t acknowledge how my son had bought t-shirts to tie dye and the tie dye kits and she made more for herself that he did, taking his t-shirts.

I never wanted to be seen as petty, or nit picking. I didn’t want to cause a problem with her dad and us, didn’t want to risk losing my son’s SSP by making her mad at me. She talked a lot about how she’d stabbed someone, been arrested, had a family as friends who would “come after” anyone who hurt or upset her. They supposedly would be willing to do anything to anyone she saw as an enemy.

My son had a quarterly monitoring due, so she moved up the date so my son could talk to someone. She looked over all the posts and comments and was stunned. Her face contorted as she read the sister’s comment. She handed my phone back and said I did not trash her sister, I didn’t mention anyone, I was concerned and frustrated and vented. She said nothing the sister said was true. She’d talked to the SSP and asked how things were going, she was told my son was great and everything was fine. She got to look at monthly reports and never saw any mention that my son had “uncivil behaviors” or objectionable “mannerisms.” (btw ‘mannerisms’ is a term used by the medical community to describe hand flapping, stiffening, involuntary body movements people with FXS sometimes demonstrate.) She confirmed that an SSP is not responsible for “correcting” anything, they are used for support in the community, directed to model appropriate interactions and social activity. She also commented that I, as the “managing employer” am responsible to provide direction to the SSP, I am the employer, before the agency, who gives me direction when needed. She confirmed there was a HIPAA violation by the former SSP, as she clearly had talked about her position, my son, her work with her sister.

After consulting her supervisor, the coordinator contacted me and said, yes there was a HIPAA violation, but seeing as how she’d quit with our agency, there really was no one to report it to. The agency could be told, so that they were aware should she ever try to be hired by them again, but other than that, any reporting of the violation would be blamed on me, even if she or her supervisor did it.

People on Facebook were so concerned, so angered by it, they sent me screen shots of the sister’s comment. They posted, addressing her directly, that she’d outed her sister as having violated HIPAA.

So here we are again. We have discussed trying agency model at a local agency, rather than continuing to direct and manage services ourselves. We would no longer have the responsibility of choosing an SSP.

Our friend, the SSP’s father, has not contacted us once since this all happened. I have promised my son that from here forward I’ll not be befriending any future SSP, will not allow them to talk to me about kids, family, health issues, etc. I don’t want to hear it anymore, I’m too empathetic. It blurs the lines too much.

I truly don’t understand how people do things like this, why they think their life and happiness should be a priority to others. I can’t imagine someone hurting one of their kids and either of them saying, so glad for you, no problem, that’s great. If they could, I’d seriously question their judgment as parents.

Cooler Temps, Finishing projects

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The last few days we’ve had temps in the low to mid 70’s. It’s been breezy, a bit rainy. Feels very much like Autumn.

I’ve been decorating for Autumn, inside the house a little at a time. I can’t decorate outside yet, as I need some new lights and leaf garlands, can’t get corn shocks or pumpkins yet either, as they aren’t available yet.

We spent yesterday finishing up some projects we’ve been wanting to get done. We set the pavers in the yard, for the grill and in front of where the swing usually sets, as it gets muddy there and is very slippery in the winter. This way it will be easier to shovel.

I painted the back door, to finish up the door maintenance I started a couple weeks ago. I also used some of the remaining white paint to do a base coat on the oil tank. It needs to be finished, then we’ll put tan paint on, to make it blend in more with the house. I also weeded the azalea bed and around the deck where some break through weeds popped up. I threw the remaining straw in the garbage can and pulled the doggy dooley out of the ground. We filled in the holes from the dooley and the rabbit nests throughout the yard. My husband cleaned out and organized the shed to make room for a small riding lawn mower our friends offered us, but haven’t dropped off yet.

The last thing we have to do is finish up the lattice along the ramp and either side of the front steps, to close it all in. Hopefully by the time we finish up, I’ll have the rest of the decorations I want to put out for Autumn. We’ve gotten so much done this year around the outside of the house. It’s looking so nice.

This weather, as with every year before, has really had me reminiscing about Autumns and Halloweens past. Good memories from childhood usually don’t include family or friends, as much as the weather, the leaves, the feelings, sights, smells of the time.

A cool evening breeze can stir pleasant memories, the smell of neighborhood fire pits remind me of fireplaces, piles of burning leaves along the streets. Some trees have begun to change color, the trees that are routinely first to change. Mornings are foggy, evenings are growing dark earlier. School has just begun, mornings are filled with the sound of kids waiting for buses, buses slowly moving throughout the neighborhood.

Walks with my Noni are slower, cooler, more comfortable and enjoyable. I can actually be outside without being soaking wet and having to change my clothes. Windows are open, the AC is off, and the house is cooler, fresher. Nights are more comfortable, not feeling like the arctic with the AC running, but windows open with comfortable breezes coming in, just cool enough to not need to be cuddled under the blankets.

Absolutely love this time of year. Trying to soak it all in and be grateful.

I Think I Have “Abuse Me” Stamped On My Forehead

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By no means am I a perfect person. I make a lot of mistakes, but I try to fix them, to do things for people without expectation. I tend to spend a lot of time walking on egg shells around a lot of people, hoping to avoid conflict, misunderstandings or a falling out. As a result, I’m always worried about disappointing or upsetting people.

Since we first moved here, we have mowed and done the weed whacking on our side of our neighbor’s fence. No one asked us to do it, we just did it, it was easier for us to do it. When we put our fence up for our dog, I not only weeded on our side of our fence, but also reached through between the fences and hand weeded that area. Every time I weeded my hands and wrists would be severely bruised and swollen afterwards. I went through numerous pairs of gardening gloves.

Our neighbor would put her hand clippers in under her fence and clip, but never reached all the way across to our fence. She didn’t do much weeding under or between her asparagus plants, which are left to go to seed and become bushy fern-like plants that push through our fence.

I found a natural, pet-safe weed spray, (apple cider vinegar, sea salt and dish liquid) that killed the weeds. They browned, shriveled up and died. The roots were not killed, so they would come back, but it was easier to spray them, than crawl around on the ground pulling them by hand. I saw no difference between the withering brown plants and exposed earth after pulling them out, so it was acceptable to me to handle the weeds in this way.

My neighbor had a fit when I sprayed the first time. She said it came through the fence and got on some of her grass. Since that time I’ve been really careful when spraying, tried to be aware of any breeze, to direct the spray directly down on my side of the fence.

About 2 months ago I sat out in the sun, for 6 hours hand pulling the weeds along that section of fence. The next day I did the same thing with the weeds along our side neighbor’s fence, taking me 4 hours. I was so crippled afterwards. I could hardly use my hands, my shoulders hurt so bad I couldn’t pick anything up, had trouble getting dressed. It took me about 2 weeks and shoulder injections to be able to use my arms normally again.

The weeds were, in some spots along the back fence, between 8 and 18 inches high. My dog eats the weeds, the asparagus that comes through the fence and I’m always concerned that unmaintained weeds are a breeding ground for ticks. I decided to spray. It was a hot day, no air moving, very humid. I was super careful when spraying, but I just couldn’t sit and do it by hand again. When I was done I felt pretty good about it. Two days later, as I was in the yard with my dog, I saw my neighbor in her yard, at her garden. I said, “hey, there’s B” (using B here, rather than her name). She came over toward the fence, very aggressive. “You sprayed again, didn’t you?” I said yeah, couldn’t do the hand weeding again. She said “You killed my grass! I spend thousands of dollars a year having my yard treated to make it nice and you killed my grass. I told you not to do that because the wind carries it over here.” I apologized, told her I hadn’t been out along the fence since spraying it, so I wasn’t aware. I didn’t do it on purpose, tried to be especially careful. She went on… “I tell them not to treat for grubs right up along the fence because of your dog, but from now on I don’t care, I’m telling them to go ahead, right up to the fence.” (Apparently the possibility of poisoning my dog is acceptible as retaliation for temporarily shrivelling some grass.)

Again, I apologized and told her I didn’t do it on purpose. I tried to be very careful. She slammed her hands down on the tops of our fences and complained about them being so close, which made no sense because there had been enough room between the fences to put a weed whacker between, until she had her fence moved right up against ours. She went back and relitigated us putting our fence up, complained about placement on property line, that our fence is on the inside of our posts, that the person who helped my husband put it up messed up some of her asparagus plants. I pointed out to her again, for the fifth or sixth time that we had to submit drawings, measurements for the fence, they came and gave approval to go ahead. After we were done they inspected it again and told us it was fine. It’s allowed to be on the property line, which it is.

She went on ranting, yelling loudly at me, that she’s tired of this whole f*cking neighborhood, tired of the f*cking kids, thinks she should move, wishes she’d never moved here years ago. She said when she saw her grass she went in the house and screamed, thought she was having a stroke. She yelled and cursed about the fireworks in the neighborhood, the neighbors who have trash and things piled around their homes, sheds, garages. She complained about the smell of firepits and how it makes her sick, that she heard our neighbor outside talking one morning at 3:30 a.m. and wanted to yell “Shut the f*ck up” and slam her window down. She complained about a little girl across the alley throwing stones toward her yard, that she had to pick up and said we probably had them in our yard too. I told her I don’t know, I’m not able to mow anymore, that was when she commented about how my husband mows, “He mows so g*d d*mn low that he’d throw them all over if they were in your yard.” She complained about our side neighbor’s tree at the corner of his fence, near her property, that it’s hanging over her fence and she’s going to have to pay out of her own pocket to have it trimmed because he wouldn’t do anything about it.

My PTSD kicked in and as I apologized again, I started to cry, to shake. She said, reaching down and pulling at the brown weeds, “Look how f*cking horrible this looks.” I told her I would come out and pull everything between the fences, to try to rectify what I could. She said, “No, you can’t do that. You shouldn’t do that. I shouldn’t have said anything, I apologize, you have issues…” I told her I was taught if you make a mistake you need to try to fix it and since I can’t unspray, I could pull out the dead stuff. I reminded her it would grow back in about 2 weeks, there’d be no sign of having sprayed.

I went back out that night and pulled about a third of the length of the fence. The next morning I finished the rest of the fenceline. As I was pulling the dead stuff, I realized that there might have been a strip about 3 feet long, 2 inches wide that was brown on her side of the fence. Had she weed whacked, she’d have cut off the brown part and wouldn’t have had anything to get upset over.

The next day I contacted our neighbor on the side and apologized if it upset him too. He waved me off saying it’s just grass and a little vinegar, it’ll grow back, nothing to get upset about.

This isn’t the first time she’s been unreasonable, unloading her frustrations and anger on me. After we initially put the fence up we didn’t speak for a year and a half. I didn’t want the conflict and didn’t appreciate the way she treated me. She’d put up a new fence and a gate onto our property saying she had a right to access this little sliver of land on the outside of her fence. I told her where she put the gate I couldn’t see it from any window in my house, wouldn’t know when it was open, when she was on our side of the fence, so would be uncomfortable letting Kodi out in his own yard, for fear of startling her, having her fall or him knocking her down on our property and her getting hurt. That was why we put our fence up, so she wouldn’t accidentally let him escape our yard through hers, or either would get hurt. She’d screamed and screamed that she didn’t need permission to enter our yard to care for hers.

The past couple of weeks have been extremely stressful. I had trouble getting my pain meds from my pharmacy, my son’s aide missed all but 2.5 hours of her scheduled work time, I’ve been having trouble sleeping, and after this abusive rant from my neighbor, had a migraine for days and spent hours that day crying uncontrollably.

My abusive mother used to say I couldn’t do anything right, there were no such things as accidents, just irresponsible acts. I was nothing but a f*ck up.

I honestly wonder sometimes if I don’t have “abuse me” tattooed on my forehead.

Maturing Husky

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Since I’ve had to return to my wheelchair, with my foot and shoulder injuries, I’ve had time to work on obedience training with my Siberian Husky.

She will be 2 and a half this July. She’s good with following commands while on her leash (as per her training), but off leash, in the yard or in the house she’s been headstrong and defiant.

We’ve been working on “pick it up” and “bring it.” She’s pretty consistent with “give it to momma.” She’s been terribly defiant about recall out in the yard, especially with my husband, but we’ve been working on it and she’s probably 75% consistent with me now.

We’ve completely eliminated the biting and scratching when I get on the floor with her or sit in the grass with her. She snuggles, lies down against me instead.

I see a lot of maturity in her. They typically say with a husky, you see a lot of calming between 2 and 3 years old. She’s certainly proving that to be true. Our bond has increased over the last couple of months. She surprised me when I got my manual wheelchair out, as she was not the least bit frightened of it or uncomfortable around it. When we took her to Lowe’s with us I used a mart cart and she walked along beside me comfortably, not the least bit frightened by it, as if she’d been doing it her whole life.

I’m so proud of her. Proud of the mature dog she’s becoming. She’s even beginning to sleep with us, rather than spending the whole night in her kennel. In the morning she gets on the bed with me while my husband is getting ready for work, he puts her back in when he leaves, then about an hour later I let her out to spend the last hour or so with me in bed. This morning she cried when it got light out to get out of her crate and get in bed with us.

She has really become a comfort. I miss walking her, that was my zen time, to be out walking in the neighborhood. I sometimes feel like I’m letting her down. So glad I have her.

Changes

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A lot has happened since my last posts.

January 31 my mother-in-law succumbed to cancer. He helped his sister clean out the apartment so they wouldn’t get charged another month’s rent and after picking up his share of her ashes and the division of the money she’d left for them, he’s not had any further contact with his sister. He’d told her that once his mother was gone there would be no further relationship, he was done.

The fall I’d taken in December affected me for more than a month and a half, affecting one hip, then both, then the other. The pain in my left hip lasted the longest and made continuing to walk my dog almost impossible. I pushed through. I spent most of my time with a heating pad on my hip.

The pain in my shoulders has fluctuated. The shot I was given a year ago in August really helped my right shoulder. The pain I’d reported to the Orthopedist at that time in my left shoulder has steadily increased. My doctor and a Physician’s Assistant in her office have injected the left shoulder twice since then, and administered a round of steroids (having to stop one of my pain meds to avoid a reaction) to no avail. The pain is so bad I can’t sleep, can hardly use my arm. I’m having dexterity issues with my left hand, pain in my elbow and down the back of my bicep.

In March, after the snow melted, I stepped in a hole in our backyard and twisted the front half of my right foot. I started having pain under my pinky toe, on the ball of my foot, accompanied by a lump. Over a couple of weeks as the pain increased and moved down the outside of my right foot, the lump went away and it became horribly painful to wear a shoe. I walked on it for 3 weeks before it was so bad I could hardly stand to wear a sock. I went to the convenient care facility and had x-rays. The doctor didn’t even touch me, looked at the x-ray and said there was no evidence of a broken bone, but he suspected a fifth metatarsal break, apparently hard to identify on x-rays. He prescribed rest, ice, a compression brace and elevation (R.I.C.E). He said if it weren’t better in a week I should see an orthopedic doctor.

After a week with no improvement I asked for a referral and my doctor refused saying I could see a physician’s assistant in her office with ortho experience. He prescribed a “boot” and told me to only take it off to shower and sleep, to elevate, rest it as much as possible for 3 weeks and return for a follow up. The boot made it hurt even worse, putting pressure on the outside of my foot where the pain was, not to mention causing a lot of pain in my lumbar spine and knees because it made me walk uneven. When I went back, I was finally referred to orthopedics. Orthopedics took me out of the boot, put me in a hard-soled shoe. It causes pain and pressure in the same spot the boot did. I’m to continue resting it, elevating it and try walking short distances to help my mental health state, as I’m battling deep depression as a result of not being able to walk, putting weight on, feeling useless.

The recent orthopedist suggested talking to my insurance company to see if since I’m now his patient for my foot, if I can see him for my shoulder without a referral. Making that call Tuesday.

I have an appointment with my personal care physician this coming Friday. I’m hoping to update her and impress upon her the need to get this intolerable pain under control.

On a brighter note… my husband and I took down our raised bed gardens (I did what I could while using my manual wheelchair so as not to further aggravate my shoulder, foot, back), planted grass seed. We took down the pine trees that had overgrown the front stairs and a dead tree. We put some flowers and a bird bath in their place. We replaced the broken lattice around our deck with white plastic lattice which really made the outside of the house look a lot cleaner. We ordered a new backdoor to replace the current one that’s rusted and deteriorating.

I’m trying really hard to keep moving, regardless of/despite the pain. I’m trying to look forward to the holiday season quickly approaching, as the year will soon be half over. Now that my front porch is more visible from the street I’m thinking about how I’ll decorate for Autumn, Halloween and Christmas. I’m looking for anything to think about, to focus on, that can help stave off the depression I feel overtaking me.

It might seem silly to describe all these physical issues, the pain, the depression, then to talk about holiday decorating, but any thing that can distract my mind from what I’m dealing with, is a good thing.

Chronic Pain – My Truth

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I’ve seen some friends with chronic illnesses sharing how isolating it can be, how even family and friends don’t understand, get angry because they aren’t able to participate like others think they should, think they are too negative or looking for attention.

I wanted to share my truth, hopefully clear up some misconceptions.

If I tell you I’m just not up for doing something, I’m not snubbing you, I didn’t sleep the night before because I was up and down all night changing positions, trying to get comfortable, struggling to find sleep through the pain.

If I tell you I can’t meet you early in the morning, I’m not trying to get you to change your plans, or get things my way, it’s because getting out of bed, getting dressed and toileting are painful and difficult. These tasks require adaptations and a little more time. I’m tired from not sleeping and the pain is often worse first thing in the morning.

If you plan something or want me to meet you someplace and I tell you I can’t it’s not because I don’t want to spend time with you, it’s likely because of the distance I would have to walk, steps I would have to climb, lack of easy access to a restroom (on ground level), length of car ride to get there, etc.

If I’m in a sour mood, emotional, quick to anger, it likely has nothing to do with you, and everything to do with my pain level, the frustration my pain causes me when I can’t do the things I would like to. Chronic pain takes a lot of energy, mentally and physically, to cope with. It makes everything more difficult and draining.

If I’m forgetful, can’t remember something we just talked about, interrupt you when you’re talking, or repeat the same things over and over, it’s not because I don’t think you or what you are saying is important or that what I’m thinking or saying is more important, it’s because I have brain fog from the pain, the medications, depression. It’s hard to focus because I’m thinking steps ahead of myself, preparing for how I’ll do something, or I simply can’t remember.

If I talk about the pain, how I’m feeling, it’s not because I’m looking for attention, it’s because I want you to understand why I’m not able to do something, or not reacting as you’d expect. I’m worried about how my situation will inconvenience other people.

If I have a relatively good day and I try to accomplish as much as I can, it’s not because I have no pain or am faking otherwise, it’s because I don’t know when I’ll feel up to it again and try to take advantage of the opportunity. I know I’ll pay for it for days afterwards, but I’m trying desperately to hold on to some sense of purpose, contribution, accomplishment.

I push myself because I’m terrified of losing what mobility and ability I currently have. I’m afraid of the pain keeping me from “living,” only existing, being a burden on those I love. Please don’t tell me if I were only more positive, if I didn’t think or talk about the pain or diagnoses, if I’d get up and move more, I’d feel better, be able to do more. That’s not true, it’s dismissive. That’s more about your discomfort hearing about what I’m dealing with than it is about what would or wouldn’t help me.

We never know what others are dealing with, we don’t know what they might be struggling with, or going through. Be kind, keep your opinions to yourself. Instead of making diagnoses or suggesting treatment for something you don’t understand, instead of making it about you and how my illness inconveniences you, try to be patient, empathetic, show a little compassion. I don’t want your pity, that’s worse than being dismissive, I just want your understanding.

I hope this helps someone understand a person in their life who may be suffering with a chronic illness.

Who the Hell Are You?

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I’ve tried hard to avoid politics on my blog, but I really need to work through some feelings that have to do with politics.

My husband and I supported Senator Bernie Sanders during the last two election cycles. We donated to his campaign, a first for both of us. We never felt a politician, before his candidacy, represented us, our values. We hadn’t really ever discussed politics with anyone other than our closest of friends.

My family never talked politics. I have no idea whether or not any of them even voted. My husband’s family seemed to be Republican, from what little they had to say, but again, it was never really discussed. Occasionally his mother would comment on a particular issue, usually something concerning seniors, but otherwise the subject wasn’t really brought up.

Being on Facebook, we reconnected with some distant family members, classmates, met some new people who were like-minded and shared our interests.

I have to say, the worst thing about social media and reconnecting is that you find out things about people you’d rather not know. I liked it much better when I didn’t know the political leanings of old friends, family members. I’ve really been stunned by the things some folks have revealed about themselves and their thought processes.

Throughout my childhood, growing up, I spent a great deal of time watching adults, family members, representing themselves in one way, but behaving in a way completely contrary to the facade they put forth.

As an adult, I’ve tried to be consistent in my values, behavior, I don’t always succeed, but I try hard. The environment I grew up in definitely shaped my values, though not to follow those of my family, but to strive to be more genuine, even if it’s not popular.

I would describe myself as a pacifist, not comfortable with conflict, violence. I try to be the mediator, to be diplomatic. I try to avoid name calling, personal attacks. I prefer to talk about things, listen to one another, rather than fighting and hurting feelings. I really do try to hear other people, learn from them. I’m anti-gun, anti-hunting, pro-life (as a personal choice but not to impose on others). I have strong opinions, as one might imagine. Never being allowed to have an opinion, or to express it, while growing up, made that a priority in figuring out who I am, who I want to be.

I’m not a religious person, having had bad experiences with religion and religious people. Too many contradictions, too much hypocrisy in the experiences I had.

This bring us to politics… I have family members, friends, former classmates, who feel the need to profess their religiosity on a regular basis. They claim their faith shapes who they are, their beliefs, the choices they make, their political stances.

I have a lot of friends and family who are Republicans, conservative, evangelical Christians. I don’t have a problem with that, people can believe what they want, everyone has their own reasons for their political leanings. Recently I learned that a lot of those friends and family members were/are Trump supporters. They believe all the misinformation that’s been promoted by the former President and other Republican politicians. They honestly believe that Democrats, liberals are all hateful people with one goal, to strip them of their rights, to gain power at any cost, to take their guns, to prevent them from practicing their religion, etc. Even though there is no actual evidence of any of those things. Even in the face of what the former President and his most vocal and ardent followers just did in trying to alter the election results, storming the capitol building to prevent the electoral college votes from being certified by congress, they refuse to see those things, to acknowledge the truth.

When Joe Biden, whom I’d not supported, signed an executive order ceasing the Keystone XL pipeline, (a decision I whole heartedly support) my cousins began posting that Christians should “pray for the pipeline.” They started to complain that it meant jobs would be lost, jobs we need, we as in Pennsylvanians. They didn’t even understand that the Keystone pipeline didn’t reference the “Keystone state”, they didn’t know where it was even located, just that if a Democrat wanted to end it it was an attack on working people. They didn’t relent even when people told them it runs through Montana and the Dakotas, on sacred Sioux lands, that it has leaked 21 times in 9 years, the most recent a 383,000 gallon leak in wetlands. There was justification for halting the project. To them, the jobs outweighed the environmental damage.

To these folks, Covid-19 is a hoax, a plot by Democrats to take over control of everything, to manipulate and control the populous, to make us dependent on the government. Anyone who is scared by the virus, who follows mitigation protocols is stupid, being a sheep, willingly being controlled. Those of us who’ve followed social distancing guidelines, wear masks, refuse to gather in groups, we’re destroying everything for everyone else. We destroyed thanksgiving, christmas, are preventing others from going out to eat, going to a bar, enjoying their lives. Even those of us they know have had Covid-19 are looked upon as just being scared by everything, living in fear, making a bigger deal of it than necessary. We are somehow complicit with the Democratic plot to destroy the country.

These same people profess to be pro-life, but don’t seem to value the lives of even their family members when it comes to Covid. I had one family member actually say they were not required to sacrifice anything for anyone else, not for me, for a friend, no one.

All the Christian posts, the memes about prayer, about God and country, but they can’t be asked to unite for their fellow human beings, for their family members, friends in a time of crisis?

One of my cousins has all but stopped talking to myself and our Aunt. They can’t be bothered to interact online, even when called, it’s like pulling teeth to have a conversation.

I don’t understand how one reconciles Christian beliefs with a lot of the things they’re supporting, positions they are taking. They don’t see the hypocrisy. They don’t see the contradictions. They don’t seem to feel any remorse at the loss of relationships with family members, friends, over political views.

Who are these people? I honestly don’t recognize them.

Life Is Throwing Curve Balls

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My husband is finally recovered from Covid related pneumonia, my son is feeling only the fatigue of Covid-19 as his other symptoms have subsided. My symptoms are still coming in waves, but much less intense each time.

Unfortunately, right after my husband came home from the hospital we had a huge snow storm. 24 inches of snow in about 12 hours. He was too weak and still dealing with pneumonia, so I had to take care of shoveling, making sure the deck and ramp were cleared, the front sidewalk was passable and dig out around the car in case we had an emergency. I fell in the snow, in our yard, on my butt, hard. Trying to get up I fell on my face. I ended up crawling to the swing where I’d cleared the snow so I could get up. Ever since then I’ve been having intense pain, first in my right hip, then both, now the left only. It’s nerve pain, like my sciatic is pinched, radiating pain through my butt cheek, in my hip, down my thigh and knee. I’ve been using a heating pad since the fall, so I could loosen it up enough to walk my dog a couple times a day, get around in my house.

My husband had an EMG test on his right arm, as he’d been having wrist pain and elbow pain for a while. Turns out he has a pinched nerve in his elbow and carpel tunnel in his wrist, both of which need operated on.

The hospital bills are just starting to come in from his 2 Emergency Room visits and his 5.5 days in the hospital. Who knows how much that will end up being.

He just found out, about a week ago, that his mother has been diagnosed with lung cancer, a cancerous spot on her liver and bone cancer in her coccyx bone. The cancer is why she’s had pain in her hip for months now. Her cancer is inoperable. She also was diagnosed with pneumonia, but tested negative for Covid-19.

His sister contacted him and caused us both an anxiety attack, as she broke the news about the cancer. She contacted him a few days later (his mother wanted to be home) asking him to call her and see if he could talk some sense into his mom as she wasn’t eating or taking her insulin. He tried to do so, but she was in so much pain, she could do little more than moan into the phone. He told his sister they needed to get her back to the hospital, she growled into the phone and handed it off to his mother’s friend “S”. S told him they were trying to get her up to see if she could walk to the car and he demanded they get an ambulance. If she’s in that much pain, don’t try to make her walk, for crying out loud. S used this opportunity to scold him about his lack of a relationship with his sister, told him it was “killing” his mom knowing they weren’t talking and he should put hurt feelings aside for her. Really?! Using his mother’s situation to try to manipulate and guilt him into letting his sister back into his life to abuse him some more?

She went to the hospital and her pain medication was regulated. She was doing much better and wanted to come home. He couldn’t see her while in the hospital because of Covid policies and his sister was designated her “support person” and each patient can only have one support person.

Hospice said they had to have a hospital bed, side table and bedside toilet in place before she could be released. Hospice nurses will visit 2 times a week. His sister is on leave of absense from work, having taken their mother to her doctor appointments and looking after her at home. S had also tried to play on his sympathy telling him his sister had been doing all this alone, was doing everything and was doing her best. Whose fault is that? Once again, they didn’t bring him into the loop, didn’t tell him how bad things were, didn’t reach out to him to ask for help. Even when he asked his mom if she had rides to appointments, she said yeah, she had it covered. His sister was “doing it all on her own” because she didn’t reach out to him, let him know what was going on, give him an opportunity to help.

The other day she texted him asking if he could come do some overnights with their mom, as since coming home she required around the clock supervision/care and his sister can have a break. She asked if they could do 3, 3 and 1. Meaning she would do 3 nights, my husband would do 3 nights and her youngest daughter would do 1 night. He agreed to that. He asked her what hours she was talking about, they agreed on 7pm – 7am. She was also interviewing a lady to come take some day time hours with their mom, someone who was a retired nurse.

She contacted him again asking if he could help pay this nurse. She was to make $10 an hour. He explained to her that was impossible, as he’s been on unemployment compensation for nearly 6 months, having had his hours cut to 20 per week, then been off work on medical with covid-19 and then pneumonia. He explained he has bills for 2 Emergency room visist and 5 days in the hospital with numerous tests and specialists starting to come in that we don’t know how we’re going to pay.

We asked if she was getting things underway with Medicaid and the Area Office of Aging, to get attendant care in place, she said that hospice was taking care of all of that.

Tonight was to be his first night at his mom’s. This morning his sister texted him asking if he could come a couple hours earlier as she really needed a break. He told her he would this time, but only because he wants to see his mom.

He’s been hesitant about getting involved, since his sister is power of attorney and had not included him in any of what was going on. He didn’t want her to think if he did this that they were going to have a relationship again, that everything was okay between them. He didn’t want there to be any arguing in front of their mother, didn’t want to be pressured about their relationship because the people who’ve criticized him for it have only had one side of the story and shut him down if he tried to explain why he didn’t want to allow her in his life anymore.

I understand his mom needs help right now, but not to sound petty or selfish, I’m in a very painful, debilitating situation with my back right now. I depend on him to take care of night walks with our dog, taking her out before bed. I feel safe with him being home with us at night, we’ll be stranded without a car should anything happen while he’s there, as we only have one vehicle. His sister didn’t bother to ask if I and our son were okay. She didn’t consider, at all, that he might be needed at home.

Had they been practical about the situation, his mother would have gone into hospice care through the hospital until attendant care was set up at home, then brought her home. The family can’t afford to pay this nurse to come in, as 10 hours a week would cost $100. None of us have that. 10 hours a week would hardly be worth the effort, as her friends in her building are looking in on her throughout the day.

He let me know he got there tonight and just texted me to tell me his sister already apologized for being late tomorrow morning. We knew she’d take advantage and do that when she grumbled about him only wanting to cover a 12 hour shift overnight.

It’s all such a shame, that things are like they are. His sister has lied and taken advantage of him so many times, only to play the victim with his mother, interfere in our relationships with his mother and our nieces. Obviously even her mother’s neighbor and friend has been told one side of the story and feels entitled to condemn him for the relationship.

He’s made the decision that he just wants to walk away once he loses his mother. He doesn’t want to be subject to his sister’s lies and nonsense any longer. The other night he was sitting here watching TV when he suddenly said, “you know, when my sister isn’t part of our lives things are so much more relaxed, we have so much less stress, drama and anxiety, but whenever she’s involved it’s nonstop problems, misunderstandings, accusations and nonsense.”

I’m really concerned about his emotional and mental well-being, having to be exposed to his sister like this. She’s got people around her mother convinced she’s been victimized by us, that we’ve been the bad guys, because we don’t allow her to be abusive to us or our son. He has a habit of going along with pressure from them, just to keep from rocking the boat. He is always all about just letting them treat him however they want just so he doesn’t get blamed for things, even though he always does anyway.