Disability

 

I want to write a book. That’s not news. It’s in the back of my mind just about all of the time. But, I have a million ideas about the kind of book to write. Then, I had an issue this week.  I let the prescription for my SSNRI lapse.

It was unintentional. I had guests and I let them distract me (I also missed an MRI appointment I had scheduled). Next thing I know, it’s the weekend and I’m out of this medication.

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The acronym SSNRI stands for selective serotonin and norepinephrine reuptake inhibitor. I take it for my Fibromyalgia, my IBS (irritable bowel syndrome), my depression, and it also has an impact on my dust, pollen, and mold allergy symptoms. For some reason, I kept delaying calling in the prescription refill.   Mainly because I knew they were expired and the pharmacy would have to call my doctors and I knew I should call as early as possible. Then, in general, I just procrastinate as part of my depression and such.

Yes, you read that right, doctors and prescriptions plural. Originally, my Gastroenterologist prescribed an SSRI (close, but not quite the same thing). Actually, she was a Nurse Practitioner (NP), but she was very helpful and did a lot of blood work for me when I first started having FM symptoms. When I finally ended up at the Rheumatologist, she prescribed an SSNRI and I ended up calling my Gastro Nurse Practitioner and asking if I could swap the two.   Later, I asked my Primary Care Physician if I should up my dose because I can’t get out of bed in the morning. She added a second pill to my dose.

Monday evening I called in the prescription refill and talked to a person at the pharmacy. I had a quilt class Monday afternoon and Tuesday morning, at the place I work. I also had a staff meeting at the same place Tuesday afternoon. I work selling Sewing machines anywhere from zero to 36 hours every two weeks. Sometimes getting out of the house is a great thing for me to do and it’s the catalyst for me to get up and do things with my day. Working a full day is generally too much, but I do it and come home and do nothing else the rest of the day.

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At Tuesday’s meeting, I talked to a fellow employee with RA (rheumatoid arthritis) and discovered that everyone seems to have issues when they reduce or go off their SSNRI. This was great confirmation for me because I had been feeling funny all day after 2-3 nights without that medicine. I woke up late for my class on Tuesday morning and I heard the pharmacy leaving a message that both doctors offices said they had no record of me. I stumbled out to the car anyway to go to class since I’d been late to class the day before and knew my boss would be annoyed with me that. At first, I thought the stumbling was lack of sleep. Though I likely got more sleep than I think I did, I felt like I was waking up every 15 minutes either in pain or gasping for air because of my congestion. After I scraped the idea to go to class, I realized I was feeling sort of, well maybe it could be called dizzy but it was weirder. It was sort of like being drunk, but not. I had the feeling that my body was turning to the right.

I resolved my prescriptions and by bedtime on Tuesday, I felt almost normal. But, I lost pretty much all of Tuesday and part of Monday. This is where I think there is something missing out there—knowledge that a large portion of the population has these invisible disabilities that might impact their life in small ways every day or might impact their life in huge ways. I feel like the average Joe doesn’t know how much these illnesses impact people’s lives.

The little symptoms I had when I was first seeking a diagnosis were annoying but not totally debilitating. Mostly, I spent a good portion of my weekend sleeping or just sitting to try and recover the energy I expended during the week. About 6 months later, my symptoms flared. I remember sitting on my couch, in pain all over that wouldn’t respond to Advil or Tylenol, and thinking that my life as I knew it was over. At the time, I could not see being able to go to concerts or walk around museums or go hiking or pretty much anything any one does for entertainment. It was depressing. After starting the SSNRI, my pain got a lot better during the day. I continued to use topical ointments like Icy Hot and Ben Gay to sleep at night. It took about 5 months for the pain to go away altogether, but it took a couple of years to not be paranoid that whatever I did might send me back into that unrelenting pain I’d been experiencing. Lots of things cause a temporary spike of pain, but I have not had more than a day or two of pain since that original flare of symptoms.

 

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In the information I’ve read about FM over these past few years, I noticed that medical experts do not recommend quitting your job. I left because I felt I needed to have the option of working at home and my bosses told me I couldn’t do that anymore. I didn’t do what I needed to do with the Employee Resources I had at my disposal. At the time, I felt like it was all I could do to get my work done and the most basic of home, child, and self care tasks.  Plus, I was pretty sure I wasn’t disabled enough to get disability retirement.

Now, I wonder how? How can I possibly get a new job when I need so much time to take care of myself? How can I get into a pay scale similar to the one I had at FDA ($50/hour)? How can I go to school to gain credentials? How can I restart when I’m 55 years old and I have no energy?

 

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When Life is Stressfull

I’m tired.  In fact, I’ve been exhausted.

I’ve been busy.  You’ve seen my soap.  I’m also working on carving wood with the idea of using wood as a negative for a soap stamp.  And I’m doing some things with polymer clay that I have always planned to do:  mokume gane, making canes, etc.

I must say that my biggest issue this past week was feeling I am not very focused.  This leads to wondering if I can make a go out of anything when I am not directing my energy into one single pursuit.

I have to say, I’ve also done a smattering of other things, like looking at poetry including several poetry publications, discussing children’s book illustrations, and knitting.  So, yeah, headed off in like 5- 10 different directions.

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For the past week or so, I’ve had plans for Superbowl Sunday.  Its been awhile since I’ve made a good meal and football is the best excuse to eat snacks.  However, back in the fall, we gorged ourselves on a very excellent purchased meal of barbecue during a football game.  It didn’t go well.  While the food was fabulous, it was too much fat and salt and calories and we were miserable.  So, I made plans ahead of time to make good, tasty food for us for this Sunday.

The short of that is: I was on my feet for about 2 hours in the kitchen chopping tomatoes for salsa and making turkey meatballs.  This does not seem like a long time, but its long for me to be on my feet.  Standing.  It didn’t seem so bad until I sat down before I made the second batch of meatballs.

 

But, its not so much the fact that I hurt after standing so long.  What threw me off was the fact that I slept a full night Saturday and still felt tired on Sunday.  And there it is: My reminder that I am not my normal self.

I am afraid that if I push myself too far, I will take days to recover.  I can’t commit myself to a job.  I can’t commit myself to starting a business (selling soap–a passing thought) because I don’t know what will push me to far and leave me exhausted again.

Maybe my prime thoughts should be to test myself.  Instead of living in fear of what I don’t know.

 

 

Aside (as long as I was in the kitchen):  Poor Sarah, my cat keeps taking her clothes off.

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