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…)
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.
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.
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.
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.
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.
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