Category Archives: Overwhelmed parenting

I’m Not That Mom

I have anxiety. I am a worrier. It isn’t coded into my genetics. It’s caused by infection, damage by infection, patterns, methylation, you name it. I wasn’t an anxious child. At least I don’t think I was.

But I am an anxious mother. And I hate playdates. My kid is being home schooled this year (or unschooled, really) and we’ve sort of avoided “friends” for the year. Not that he had a whole lot of play dates during the past three years of our healing journey, but certainly a few per year.

Today, we had his friend over. From 10:30 until 6:30. Or was it later? It was a long day while his dad went to pick up his big brother at college. This friend is smell neutral, which makes him really easy to have over. He is articulate, confident and solid. And his parents are terrific.

I kept the friend safe enough. Last time I forgot to tell a different friend  to remove his socks if they were going to be running around. Several stitches later, I learned my lesson. So I was ready this time. Socks off. Warnings made. Anxiety on full blast.

I fed them. I watered them. I took them to the park. We went to the tennis courts. I let them play “pull the squid out of the water,” and all kinds of things that involved the possibility of joints out of place. I let them swing at the park so hard that I nearly barfed. Each time they leaned back at the same time they were flying forward my vertigo kicked in, waves of nausea rushed over me and I saw visions of the swing set flipping over. (Flashback to 1970 and my own childhood.)

But I did fine. They did fine. We survived it all. And none of us took tranquilizers.

It’s so hard with a kid like mine. He gets tired, and pretends he isn’t. He is so hungry for playtime with kids his age that he just won’t stop. He is in their faces, farting on them,arguing with them, bossing them around.  My kid is irritating. And delightful. And fun. And intense. And hard. And hungry for friends.

The buddy didn’t want to watch a movie, but was really gracious when I told him that my little guy was really tired and needed to refuel. He was a good sport when all my kid wanted to do was “fight like men” with him, after the refueling. They beat the crap out of each other for hours. And I wish I were kidding.

I am exhausted. Not by the kids, but by my worry. And my sadness that my little guy doesn’t have more experience with this whole “play date” thing. But as long of he has me for a mother, I have to accept my limits. I live with narrow options right now, still. I am more well than I was three years ago. I was AT the park. That’s a big deal.

I don’t know what this narrow world means for him long term, but for now, it’s the way we need to roll.

 

Is There A Stimulus Package to Help My Deficit?

I’ve been continuously moved by this link since I saw it yesterday. It’s from ProHealth.com and it’s good. I seriously can’t stop thinking about it. It’s been like a smack in the head. All day long. I get it. Really. I just don’t know how to apply it.

Dr. Sarah Myhill asserts that healthy people have 1000 pounds of energy per day, and people with Chronic Fatigue Syndrome (or other Lyme Like illnesses) have 100 pounds to spend. Okay. I can live with that. My body makes me live with that EVERY single day. Day in and day out, I have 1/10 of the energy that most people have per day. Okay. Radical Acceptance. Got that.

But then, she goes on to say that people like me need to bank at least 20 pounds of that energy every day in order to actually heal.

Yikes.

I go back and forth between accepting that as true, and just being really angry about it. FIRST, I only get 1/10 of the energy most people get to do what the world expects of us as societal members. And then, I have to hold 1/5 of that pittance in reserve or I’m operating in a serious deficit. Okay. Fine. I’ll accept that.

Truth: I am so far in healing debt, and I have no idea how to get out.

What the hell does that look like to hold 20 pounds in reserve? I’ve never been particularly good at math, but every way I try to add it up, it doesn’t mesh.

I try to use that 1/10 that I get to do it all. Raise my family, make money, eat, go to medical appointments, fight for services that other disabled people get without much effort. There’s no time for rest, unless my body or my blood pressure makes me. There’s little interaction with the healthy world. And I rarely go ANYWHERE that isn’t required by my illness.

And even with those cut backs, I operate in a deficit every single day.

I keep thinking about Ruth Hayden, who is an amazing financial person who works with Women and Money and sometimes with Couples and Money. I’ve taken classes with her and she lays it out in simple terms. You have X amount of income and X amount of expense, and you have to make them match. You do that by EITHER making more income or by reducing expenses. Or both. It is simple math.

I’m trying to apply that concept to my available energy. I reduce expenses and gain more energy. Simple math. But somehow, with a tired body screaming at me. . . and so much that has to get done, I just don’t see the equation working out.

I’ll take any advice you have to offer me. What would YOU do if you went from having 1,000 pounds of energy to spend to having 80. How would you live your life differently?

Help me with my deficit reduction plan. I’m all ears.

Thanks For The Wheels, Mama!

In 2001 when my mom was dying of cancer of the pancreas, my brother decided to buy a wheelchair for her instead of rent one. “Someone will need it someday,” he insisted. I didn’t get the point, she she was dying from the moment they found the cancer. But we went on many walks around the neighborhood looking for robins and buds and enjoying the sunshine, together.

Even while I was getting the hang of operating it, she still had her sense of humor. I wheeled her forward over the lips and curbs, instead of backwards.

“Are you trying to kill me?”
“Nope, just trying to add a little excitement to your day.”

Seriously. . you can really lurch someone forward with those things. Today, I know that from experience. And children should not be allowed to operate them. Unless they really do want to kill you.

Although his appearance may fill you with fear, it was my husband who did the most damage.

“We are going to have to remodel, honey,” my husband said as he banged into every corner–from the couch I have become one with–to the bathroom that is smaller than a trash can.

I don’t want to remodel. Nor do I want to need a wheelchair. This treatment makes my joints lock, hurt and swell. I keep blacking out when I try to stand and even if I could, I don’t have the breath capacity to make it across the house. But it’s hella better than the firefighter’s carry. Yeah. That wasn’t working at all. I weigh more than he does, and frankly, he isn’t as strong as he thinks he is.

I never thought I’d really need a wheelchair. If I skip my meds tonight, I might not even need it tomorrow. Such is the nature of lyme disease. If I keep a sense of humor about it. . it’s okay. It gets me to and fro. Those missing pieces of plaster on the edges of the walls and doors? Someday, we’ll tell these stories and laugh.

And No, It isn’t Munchausen Syndrome

I went to Physical therapy for a total of 64 sessions at one clinic and about 15 at another over the past year. My locked hip thawed, and my left hip developed an impingement. My Right shoulder started to freeze, then fully froze and now my left shoulder has an impingement. I’ve been told many things while I have had this shoulder problem.

“She appears to be a malingerer,” says the very young PT whose notes read more like the notes of a psychic than a health care practitioner.

“Her arm appears to be fine,” says the Psychiatrist who interviewed me while I had my hands in my lap. This was the same psychiatrist who told me that I was obsessed with a fictional disease that I didn’t have. (Note to the doctor that I named, “The Dragon Lady,” no one can actually have a fictional disease.”

“Her pain doesn’t follow the typical course,” from my functional capacity test.

Well today, a little too late, I was vindicated. Yay! This amazing Surgeon said that surgery for frozen shoulders are common place and yet there is no evidence that the surgery does any good. And he isn’t going to cut into my shoulder.

Because I have repeatedly “Refused steroids,” I am considered by many, a patient that doesn’t want to get well. But here, this famous surgeon was saying, it’s too late for steroids. And, if the left shoulder begins to freeze, we could do injections of steroids, but they would only last 2 months and with the auto immune component, he wouldn’t do it unless my primary doc agreed, and she won’t.


Apparently, there are a few things that I have going against me with this whole frozen shoulder thing.

1.) I am a woman approaching menopause (theoretical hormonal causality).
2.) I am fair haired, light complexion (theoretical hereditary causality).
3.) I have what the surgeon called a “hyper auto immune issue” that means there is really nothing that can be done to speed up the healing and physical therapy is the WRONG approach.

I’ve heard from other therapists that those who do the best with frozen shoulders don’t have auto immune crap going on.

My question is, “What is my auto-immune crap?” It doesn’t appear on any labs, really. Not any common ones. You have to dig into a specialized test at a specialized lab in order to see my auto immune condition. But it is there.

Not for one moment did he add Munchausen Syndrome to my list of challenges. Nor did he say, “Somatization disorder” is possible.

But today, none of that matters, because THIS doctor did me a great service. He told me that the fact that my peronius longus muscle in my left leg hurts every time my OT or bodyworker manipulates the trigger points in my right bicep, doesn’t make me crazy, nor does it mean that I’m faking it.

He told me that It doesn’t matter that my pain doesn’t make sense. I’m wired differently, that’s all. The man gave me no options and no solutions during our visit, but he didn’t treat me like an anomaly. He recommended I learn some baseball/shoulder stretch, and I’m meeting with his PT asap to learn those. It’s funny, he gave very clear instructions to the therapist. “Conservative Protocols: 4-corner stretch; reverse Codman’s; ceiling punch; No passive motion/stretching.” And a final note: “Be gentle.”

He treated me like I mattered. That my pain mattered. That my illness is causing my pain. And he admitted that he likely can’t help me. And that he can’t stop the left shoulder from freezing. Still, I walked out of there knowing that I’m okay. Despite my illness trying to tell me otherwise.

That, my friends, is a fine Doctor.

When the day of Resurrection seems more like crucifixion. Or: Happy Easter!

It’s Easter. I’m treating for babesia, and it sucks. I missed the Bunny, the egg hunt, everything.

The days of being the energizer bunny –forcing myself to take the stairs to get a load of laundry done, changing my sheets, teaching, closing the drapes, those things seem so far away. I don’t know that I will ever be able to do anything again.

And, I know that this is what it is like in the middle of a herx. I got up out of bed to use the bathroom. And then back to bed, a shaky mess. Now, I’m eating my son’s Easter basket, because I can’t get up to get anything else, I had no energy to make dinner last night, and my blood pressure won’t allow me stand without help.

Yesterday, I took the stairs one too many times, with one of my little lyme boys in bed with 102 fever and the other one obsessively hiding and re-hiding plastic Easter Eggs. I can’t keep going on like this.

People always wonder how I can drag my weary and pained body down to the co-op for mac and cheese, or . . . frankly, I can’t even remember what I used to do while sick, because right now, I have to type one letter at a time, delibrately, because my fingers and brain don’t seem to be communication. What I learned from Victor Parduhn in Typing class — the skills that I was told would be with me forever have failed. At least for today.

So, this is what makes me look like I’m faking it. The things that make bad Physical therapists who don’t know how to chart call me a “malingerer” or Psychiatrists that don’t bother to physically examine me declare, “There is nothing physically wrong with her.”

I’m tired. Not just of treating this disease, but all the disbelief that exists with it. I’m on a message board and people are trying to prove that sexual transmission of lyme doesn’t exists. . when the truth is, that there is no proof with ANYTHING in lyme. No proof doesn’t mean that this isn’t a wicked disease, but that’s how I am often treated.

I went out on date night on Thursday after going to the doctor for a glutathione push. Friday, I went to lunch with a friend, then picked up an 800 page document with many of my medical records from the Sir Speedy print. Yesterday, I drove to the co-op to buy candy and food for the kids’ baskets. I can’t possibly be disabled. Sure, those were the only things I did. One to two things a day. No cleaning the kitchen or cooking or walking the dog. No picking up around the house. Nothing else. But technically, because I did about 7 things in the span of a week, I am not disabled.

What does disabled mean? Really? Does missing out on 90% of life qualify you for that title? Not being able to get out of bed? Feeling pain that is so intense and it won’t let up. . .yet choosing not to take opiates because it makes more sense for my struggling body to breath, move through it, cry, hang on to the wall and just wait for it to pass?

Does spending time on Facebook because you can’t do anything else make you NOT disabled?

And what does it do to you if you are officially given that title? Can you give it back? Can you ever get well? I don’t know. I just want to be well. And I’m losing my patience.

“Your kid isn’t sick!” Glad you told me that. I won’t waste energy helping him heal anymore.

“But you are so good at teaching!” Yeah. . . I used to be, but it’s getting harder. Really hard. I do it because I love it. I do it for the money. I do it because the kids I teach are so amazing, and they remind me that I have skills and talents that nobody else has, not in the exact way I have them.

“But you don’t look sick!” Oh, thanks! I guess I’m not, then! I’m so sick of people needing to prove that I’m someone dealing with Munchausen Syndrome instead of something physical.

I’m just tired of the misconceptions.

I gear up my body and my mind to teach classes in the summer. It is really hard on me. I think about not doing it every summer. And then I get a message like this: “G took this class last summer and is enrolling again. She loved the class so much! I had never seen her so excited to share her work before,” and I know that I have value in the world, even when my body tries to convince me that I don’t.

Are the costs of forcing myself to not lose contact with the world finally catching up with me or is this just a herx I feel like I’m never coming out from?

I don’t know. It feels like no one knows. And that’s the problem. Yes, it is likely that I need a new doctor, one that will give me a little more direction. But that’s hard to find, drive to/fly to and afford. But I’m moving towards that. I need to get well, so next year I can feel the Alleluia, not just the crucifixion.

Truth or Denial?

I lost a friendship awhile back that frankly, I wasn’t all that sad to see go. She was in such denial about her health issues, walking down the same rocky path that I had fallen on for many years. Low blood pressure. Heart issues. Fatigue. No stamina. Mental health issues. Hopelessness. Kids with similar health issues to my own kids.

She watched me in horror, and eventually, that horror turned to judgment. Yes, maybe I am that gal that thinks that everyone has a tick borne illness. But more likely, I am the gal who knows that Lyme, like syphilis before it, is called, “The Great Imitator.”

Yes. You might have a tick borne illness. If you kids are on the autism spectrum, if you have OCD, if you have depression or anxiety. Yes, you might. If you have MS, or ALS or Rheumatoid Arthritis or Fibromyalgia or Chronic Fatigue or Parkinson’s or Sarcoidosis or Lupus or Scleroderma, they might have been caused by underlying tick borne infections. And no, your doctor won’t tell you that. In fact, if you go to a lyme literate medical doctor and get a formal diagnosis, your primary doctor might not believe you. This disease is under reported. Misunderstood and contested. Yep. It is. But persistent infections are VERY real and very hard to diagnose.

My husband knows a woman who was under treated for lyme a few years ago. Now, she is spending time and money and energy trying to figure out why she still has all these issues. People are telling her to talk to us, to see a lyme doctor, to get better testing, but like my friend I mentioned above, she doesn’t want to. She has seen our journey and she doesn’t want to join us.

So, if you are one of those people, let me tell you something. I am two years and four months into my treatment and the last couple of weeks I have had the longer length of “good days” that I have had in years. What would I be like if I hadn’t started treating? What would things be like if I hadn’t started treating my kids? Theoretically speaking, I could be losing much more of my memory. I could have had heart failure. I was heading down the road to a diagnosis of MS or Parkinson’s, which it looked like I had, but I didn’t. I could be on intense meds for the wrong illness, without hope that I might someday get well.

It’s been two years and 4 months since my diagnosis. That’s all. Sure, things have gotten worse with treatment in many ways, but wouldn’t they have gotten worse in different ways, without treatment? I think so. Trust me on this one. I’ve had this illness all of my adult life. I have damaged my body in so many ways by ignoring it.

I’m still ill. I might always be ill. But, I might not. My doctor believes that I will get well. Friends I have that are well after their lyme treatment think that I will get well. I intend to get well.

Is it really worth giving your life up and your hope away, just because you are scared to have this awful disease? Just because you don’t want to have a disease that from an anthropological perspective, looks like the way AIDS was treated in the 80’s? Be brave. Fight for yourself. Fight for your life.

I worry about moms who have been sick for as long or longer than they have had children. I want so much for them to step out of denial. If you have ever had a tick borne illness, and if you have ever been under treated for that tick borne illness, your children might have a congenital, persistent infection. Better to start treating it now than to wait until they are in the psych ward at 16 or in the hospital, nearly dead from those illnesses presenting in a way that the doctor’s can’t identify. The last one happened to us. If someone would have said to me, “have you ever had a rash and a bug bite?” or “Have you ever thought that your kid’s hyper-activity might be from an infection,” I would have started to research it. And my kids would have been treating long ago, maybe even from the moment they suspected “Cat Scratch Fever,” which is also Bartonella. I would have known to ask for tests. Ask for long term treatment. But I had no idea. I was a scared mom with a nearly dead two year old. I didn’t know.

But now I do. By watching me, you know, too. Information is power. See a lyme friendly doctor and get screened for Lyme. Don’t get a typical test, use a lab that specializes in lyme testing like Igenex or Neurosciences, Inc. You deserve to be treating for the correct disease. Maybe it is a tick borne illness. Maybe it isn’t. But this head in the sand pose doesn’t help anyone.

Today, I want to applaud all the people I know that took control of their health situation and walked into the research, especially the people I have encouraged to open themselves to this awful diagnosis. Like Addy and Eliza and Britta. I want to applaud my friend Julie, who wasted NO time getting her daughter tested. She refused to live in fear and instead, moved into action. Mama Ninja. That’s what I call her. It’s better to live in the truth than stay in denial. Truth puts you on the road to wellness and acceptance. Denial? Not so much.

And this Sunday, attend Julie’s benefit. Or send her a few dollars at her giveforward.com site.

You Don’t Know How Good It Is. . .

Until it is gone. I don’t have a lot of services to rely on. No housekeeping, no funds for a cleaning service. No personal care, no respite to help with the little guy. I have a few great friends who are willing to help if I call on them, and a whole lot of people who steps in during the Bartonella Crisis (we are darn good at the crisis, aren’t we), but mostly, I rely on my oldest son, my friend two states away (who my son will text to call in more troops), and my husband.

Cruising toward the discomfort of a two year anniversary from my diagnosis and yesterday, my husband woke with the worst herx. This is the guy who can get up with the kids, make food a whole lot, go to work, sometimes 3 different jobs in one day, often two weeks without a day off.

And now, today, he is as bad as I get on my worst days.

What do you do, when the person you could often count on to help, especially in the mornings, has severe adrenal fatigue and difficulty functioning?

You get up.

Last night, we all tried to go to bed early. I was asleep, then awakened by my teenage insomniac. “Where’s the Melatonin?” threw me into several hours of broken sleep and restlessness. I finally got up at 1:52. I tried to sleep again. Paced a lot. Cried some. Finally, I forced myself to lie down and focus on my breathing, after taking some advil. That was a little after 4 am. I fell asleep, soundly, and comfortably, only to hear the alarm at 6 am.

Back to School. Got breakfast, drove the teenager to the express bus. Came home and crawled into bed. 5 minutes later, the little guy was up, time for meds, breakfast, homework, bus.

Husband still sleeping. Calls from county office. Faxes to send. Appointments to plan for. Dog to walk.

I let bitterness block out how much he did for me. Now, it’s up to me to rise to the challenge. At least for today. Not only do I have to do the things that I always do, today, I have to do everything he does as well. This disease and the desire it has to swallow families whole is trying my patience, but what can I do?

All I can do is keep breathing.

Ice Pack on Shoulder. Check.
Dog on Leash. Check.
Ready. Set. Go.

I’ll try for the sleep thing again, tomorrow.