Medical Shenanigans Part II

The rheumatologist’s nurse called me today. My labs are abnormal. My sed rate, TSH, and T3 are high. The Sjogren’s antibody test was negative. The rheumatologist is referring me to an endocrinologist. The endocrinologist doesn’t have appointments available for three months. Another day, the same medical shenanigans.

I tried to explain to the nurse that taking oral contraceptives can cause an elevated TSH and elevated T3. However, the nurse didn’t understand the difference between a T3 hormone level and a thyroid antibody test. She kept telling me that my “T3 antibodies are elevated”. That statement doesn’t make sense. T3 is triiodothyronine which is a hormone level, not an antibody. TPO and Tg are antibody tests but she couldn’t tell me if the rheumatologist ordered an antibody panel. The nurse snapped at me for questioning her…for having more medical knowledge about this topic than she does, really. Again, same medical shenanigans, different day.

Now I have the “pleasure” of waiting months for treatment again. Just when I felt I was starting to make headway with treatment, or at least have a diagnosis, it all gets turned upside down. If I had an option, I’d quit medicine. I’d quit seeing doctors, making appointments, having tests – all of it. I’d just move on with my life and focus on something-anything- other than how much time I spend feeling sick.

(Oh! And the Sjogren’s antibody testing being negative? That doesn’t really mean I don’t have Sjogren’s. The test has a 30% false negative rate. Sigh…)

New Rheumatologist. New Recommendations.

My previous rheumatologist retired unexpectedly. After months of waiting, I was finally able to see a new rheumatologist. She ordered new labs, questioned my current diagnoses, and (of course) recommended I stop taking pain meds.

Yes, she said I should stop taking Ultram. In her opinion, I should completely stop taking the only medication that has allowed me to remain active and functional. I should stop taking Ultram, which I’ve taken for a few years now, because some people become addicted to Ultram. <insert grumpy eye rolling face here>

I am not addicted. After several years of taking Ultram, I’m unlikely to become addicted (less than a 1% chance, actually). I only take Ultram to reduce the exceedingly high levels of pain which I experience daily. I don’t even take enough Ultram to eliminate the pain, just reduce the pain so that I can function and focus on something other than, well, being in excruciating pain.

So, even though I am supremely irritated with this course of treatment, I’ve started the slow process of tapering off Ultram. I don’t want to be written off completely as a non-compliant patient (which is what happens if you are both fat and do not do exactly as your doctor recommends). This week, I reduced my dosage by 25%. I’m already experiencing a marked increase in pain and pain-related sleep disturbances. Things are only going to get tougher from here as I return to my excruciating, pre-medication state. I really don’t want to go through this. I can only hope that there are other pain relief options which may work for me.

Luke and the Living Hell

Today was a difficult day with Luke. He didn’t take his medicine Saturday or today so his behavior was completely out of control. He screamed. He insulted. He blamed. He shouted. He stomped around, broke things, and slammed doors. It wasn’t just one tantrum, he behaved this way the entire day.

By the time he went to bed, he had 4 shouting fits and 3 screaming, crying, hitting, meltdowns. The difference between shouting fits and meltdowns is that Luke retains the ability to speak coherently, albeit horribly, during a shouting fit. During a meltdown Luke vomits nastiness incoherently while screaming, crying, and behaving violently.

I’m taking him to counseling. I’m getting him meds. I’m doing everything in my power to try to help him but it seems his behavior continues to worsen as he gets older. I don’t know what else to do.

The counselor suggested sending Luke to residential treatment – a group home, basically. Jonathan absolutely won’t allow it.

For the time being, I have no choice but to suck it up and manage through the constant insults, berating, screaming, shouting, and violent fits of rage which occur on a daily basis. Luke says his “life is a living hell”, but it’s Luke who is making our lives a living hell in actuality.

Money In, Money Out

Jonathan got paid $400 of the thousands he is owed. While it the saying is true that every little bit helps, $400 doesn’t help that much when you’re owed thousands.

I’m preparing for a yard sale this weekend. I’m fighting the unrelenting fatigue that comes with fibromyalgia and RA after work so preparations are going slow. I’m also planning the sell one of the only electronic devices I have worth selling: the iPad Jonathan gave me for Christmas. I need the money too much not to sell it as much as I’d prefer to keep it.

The only purchases I’ve made recently are medication and clothing. I need medication to continue living. I need to clothing because work suddenly changed the dress code policy so all the clothing I previously wore is now “unacceptable”. The CEO doesn’t think things through when he makes changes like this. Most of us are paid a tiny fraction of his salary and he doesn’t grasp how significant the changes are to our paychecks especially those of us who support more people than just ourselves (he lives alone).

Although I need the clothes, I still feel guilty about buying the clothes – even at 50% off, I feel guilty. That’s another problem with financial instability – even when you purchase things you need, you still feel guilty because the money could have been used for something “more worthwhile”. There is nothing more worthwhile, though. It only feels that way.

 

Financial Instability is Exhausting

Jonathan hasn’t gotten paid again. This is an ongoing problem. Here I am again trying to stretch my earnings to keep the utilities on. Living in poverty is tiring, but so is constant financial instability. We’re not overspending. We live pretty simply, actually. We garden, we buy used cars, I coupon at the grocery store…we’re still falling behind and it sucks.

I’m working to re-home Dee’s dog which I’ve been fostering since she moved. I cannot afford vet bills and I cannot afford another mouth to feed. I’m also wracked with guilt like I should be able to take care of the foster dog but can’t.

What should I sell this time? All the jewelry worth selling has already been sold. The antiques have already been sold. We wouldn’t get much for our older TV or game system, plus the kids enjoy those.

Tomorrow I take Luke to get his blood drawn for labs. He needs regular blood work since he’s on the mood stabilizer risperidone. I promised him a bacon, egg, and cheese biscuit as a reward. I’ll have to raid what’s left of the change jar for his biscuit. I can’t send him to school hungry.

Every monetary decision I make is bad. Well, at least it feels bad. Every dollar I spend on one need takes away from another need. Here’s hoping Jonathan eventually gets paid. Paying all the essential bills this month for things like electricity, phone, and groceries would be a relief.

I get paid less than my coworkers

It feels like there isn’t much to write about that I haven’t already written about.

Today it became apparent that I make a great amount less than my coworkers again. My coworkers were gathered in the hall talking about their stay-at-home spouses (mostly wives) and all the expensive belongings or activities they’ve purchased for their children lately. My home costs half as much as any of their homes and I can still barely make ends meet even with a spouse who works.

I often contemplate changing jobs but fear losing the flexibility my current job offers to deal with child care and my health. Most other jobs in my field involve inflexible schedules, 60+ hour weeks, 24×7 call, and nearly constant travel. Not conducive to raising children. Since Jonathan spends much of his time taking care of his dad these days, I truly am the only one raising the children.

The good news is I’ve paid off one of our outstanding debts so I have a little more money to stretch each month. Mostly I’ll be stretching that money to pay down other debts or to afford Christmas presents since it’s only an extra $100/mo.

On one hand, I need to do something to earn more income. On the other hand, I’m too sick to work a second job and too busy raising children and taking care of everything from cleaning to bills at the house to start a side business.

I’ve written about all this before. It feels like one step closer, two steps back all the time.

Donations for Domestic Violence

A friend of mine from the chronic life and spoonie communities is in dire straights. If you have even an extra $5.00, it would help her tremendously. Presently, she’s staying at a shelter until she can find housing. She’s unable to work due to EDS so she has little alternative but to depend on donations to help her find housing and receive medical care.

The link to her GoFundMe page is: https://www.gofundme.com/2j24q8us

Luke’s Behavior “is [my] fault”

I should be sleeping yet I’m wide awake again. Normally when I’m wide awake this late, I’m having painsomnia (pain so severe you can’t sleep).

Things have gone smoother with Luke recently…until tonight, that is. Luke called Oliver a “bastard”. I told Luke to go to bed for the night for calling his brother names. Luke was defiant and determined to test boundaries so he earned an additional consequence: losing his tablet for the evening. Instead of turning in his tablet, Luke completely. flipped. out.

Luke screamed and shouted and kicked the wall beside his bed. He positioned the tablet so that I’d have to physically wrestle it out from under his body. He called Jonathan and I unfair, the worst parents, fuckers…every adjective he could think of at the time. He threw things at Jonathan and told me that he hopes I die and rot in hell.

This HUGE outburst lead to him losing his tablet, computer, and cell phone. These things were not taken away all at once. He lost them progressively during the course of his massive, manipulative, tantrum.

Jonathan blamed me for Luke’s behavior as Jonathan typically does. If I require a consequence of Luke for his behavior (ie go to bed a little early because he called his brother a bastard), Jonathan blames me for Luke’s ensuing defiant behavior. It’s difficult not to roll my eyes at Jonathan for enabling Luke’s nastiness by refusing to intervene until the situation is completely out of control.  Jonathan thinks that I escalate Luke’s behavior by actually enforcing the consequences for breaking a given rule. The family therapist and I disagree. Inconsistent consequences escalate Luke’s behavior. Jonathan tends to enforce consequences inconsistently.

I’m sure it’s no surprised that after all of the shouting, screaming, insulting, name calling, and generally stressful behavior, I don’t feel like sleeping.

The Status Of Things

My scalp itches. My hair is falling out. I’ve struggled with skin allergies and bouts of eczema all summer.

Luke and Oliver won’t stop being cruel to one another. Oliver hits and calls Luke names. Luke yells, curses, and calls Oliver names. They argue and fight constantly. I don’t know what to do to help them be less cruel to one another. We have a family therapy session next week to discuss these issues.

Jonathan feels too poorly to help around the house again. All responsibilities fall to me. If I don’t cook dinner, assign chores, clean the house, watch the children, check homework, sign papers, feed the animals, and clean the house it simply doesn’t happen.

Jonathan’s paycheck was also a month late causing a huge checking account overdraft. I’ve spent several days trying to sort out the overdraft and persuade the bank to refund hundreds of dollars in fees.

I’ve also spent several days getting in touch with Luke’s teachers in hopes I can proactively set up tutoring and study sessions to keep him from failing 8th grade.

It would be very convenient if I didn’t have a chronic illness right now. I’d have so much more energy for all of this. It’s utterly exhausting. Unfortunately, these are the cards I’ve been dealt and I’m trying hard to accept my hand.

The only good thing about today is that it’s over

Today has been difficult. Every single element of the day was riddled with problems.

I feel like I shouldn’t talk about the passing of my friend with Jonathan. Jonathan has a low opinion of social media, the internet, and online friendships in general. It would be hard for Jonathan to understand how important this friendship was to me and how heartbroken I feel over the loss. Jonathan has also been dealing with job instability and helping his father who is slowly dying of stage 4 cancer so he doesn’t need any more upsetting news.

At work, my superior made a poor decision which had a negative outcome so he threw me under the bus to save face. I spent the entire day trying to dig myself out from under the mess he created instead of working on scheduled assignments. Now, in addition to being put on the spot and verbally reprimanded for something that wasn’t my responsibility in the first place, I’m a day behind on all assigned projects.

While I was working, Dee called me asking for advice on how to handle her landlord who is threatening to evict her based on something her ex-boyfriend did even though she’s never been late on rent. Dee was again contemplating suicide and cutting. Then another friend called asking for advice on how to handle her unexpectedly heavy period. I mistook these calls for genuine emergencies since both parties know not to call while I’m at work unless there is a genuine emergency. (Dee threatening suicide is not an emergency.)

When I arrived home after work, Jonathan had left for another small job in a neighboring town so I had all evening alone with the kids. Being alone with the kids doesn’t especially bother me, but I really needed to work most of the evening to catch up on the projects I’m behind on due to my superior’s aforementioned incompetence. Since I was the only adult in the house, I needed to constantly break up arguments between Oliver and Luke, manage Luke’s behavior, ensure homework was finished, and keep the kids on schedule. Needless to say, I accomplished nothing other than household chores and child wrangling.

Luke and Oliver spent so much time arguing, fighting, picking, and generally being jerks to one another that I couldn’t even finish vacuuming and mopping the house until almost 11PM. Vacuuming and mopping needed to be finished tonight since we will have guests Friday, Saturday, and Sunday.

Then there was the completely unnecessary Twitter drama…that’s a subject for another day.

The only good thing about today is that it’s over. Well, and cats. Cats are good too.