Sunday, September 16, 2018

Sometimes I Ignore My Health Issues

I just spent a few days ignoring my health issues. I had a lot of fun. I know am recovering. I didn't do anything stupid - like drive a long distance, climb a mountain, or even go to the mall. I only drove probably less than 1 mile (looking for coffee one morning). I walked around a small city.

Okay, what I did do:
  • I walked 10,000 steps one day.
  • I rode on a boat.
  • I rode on a bus tour (to breweries) which means I drank beer during the day time.
  • I walked on the beach four days in a row - some days for as much as an hour at a time (I'm addicted to beach walking).
  • I went out for two meals a day - which means I didn't eat the best. 
I am exhausted as a result. I will spend today mostly in bed so I can rest. Every day I probably did too much every day. We overslept on the one day we needed to get up in time to catch the bus because I was so tired.

Being mature, I am also ignoring all current potential medical issues because I just don't feel like dealing with them - that is my biggest coping tactic. In this case, ignorance is bliss.

Wednesday, September 5, 2018

Changes with Chronic Illness

Yesterday I read an article in the Boston Globe about how young adults with a chronic illness who go off to college, now have to learn to cope with their ailment with out parental support. I read it with a bit of cyniscism (okay I can be a bit of a cynic these days). Horrors to Murgatroyd, their mommies and daddies aren't there to make sure they take their pills/check their blood sugar/go to the doctor without a helicopter parent. Okay, I am a real cynic.

Cynic or not, I do get the point. If you develop a chronic illness as a child, your parents help cope and plan how to treat the ailment. You are cushioned from the realities of being 'sick' until you reach adulthood.

But as an adult, your world is turned upside down with your diagnosis. Here's an example. I hate needles. I really hate needles. I can't look when there is a needle near me. I can't watch TV ads or news reports on the importance of getting a flu shot. Now I have the joy of getting shots twice a week. (My husband has to do them and I close my eyes.) I also need blood work every eight weeks for my RA treatment (checking for liver damage from RA meds). And I need blood work a few times a year for my (lack of) thyroid. I really hate needles.

This to me can be just as distressing to have needles stuck in me and are an uncomfortable regular reminder about my health issues. My husband is nice to me about it. He tries to make a joke about giving me shots.

Adults don't have the luxury of someone to hold their hand through all their medical diagnoses so they have to learn to cope on their own. Honestly, I think that young adults who have been coping with an ailment since childhood are probably in pretty good shape to manage their health because they have always been that way - they don't know how to handle a healthy body because their unhealthy body is their 'normal'.

I say let the college students have a chance to stand on their own two feet before swooping in and double checking on them. They need to learn to take care of themselves as any adult does.

Monday, August 27, 2018

A Victim of My Own Stupidity

We took a two week vacation earlier this summer. As a person with a few ailments, I travel with my own personal pharmacy. This requires some planning ahead and balancing insurance rules (meaning you can't get extra ahead of time) and my medical needs.

Before we left I made sure I filled my daily prescription boxes with two weeks worth of meds. I noted a couple that needed refills right when we got back. Most importantly, my prescription pain patches needed a new prescription from my doctor. I made a little note on my calendar for a couple days before our return so that I could get the prescription rolling before we arrived home. This prescription comes from regular mail order (as opposed to specialty mail order) and I need to allow a good ten days from when I ask my doctor until the prescription shows up. These pain patches are a vital part of my medications because they allow me to live at a substantially lower level of pain and do not require me to chase my pain with pills (that I would never remember to take). Memory is not one of my strong suits these days.

I made a little oops. I looked at the reminder on my calendar when it popped up and said to myself  'I don't want to think about that yet' and told myself to remember it when we first got back.... That was so smart.

On Wednesday or Thursday a full five days after we returned, I put on a new weekly pain patch and realized I didn't have any more (crap) and that I needed to get that new prescription (double crap). This is a SEVEN day pain patch. Not a seven plus ten or so day pain patch. I then realized I needed a whole bunch of refills but less urgently.

Next project - get all my precriptions ordered. I get my prescriptions from three sources: local pharmacy, mail order pharmacy, and specialty pharmacy. I put in my orders online for four different doctors on my hospitals app. I thought I noted on each one where they needed to come from.

Then I get a notice from my local pharmacy saying a prescription was delayed. I ignored it for a couple of days. A day or two later I checked and found my 7 day pain patch which needs to come from mail order was ready at the local pharmacy for the low price of $83, instead of the mail order price of $15.

I called back my doctor's office and asked for a corrected prescription from my doctor to go to the mail order pharmacy. That was on a Thursday (over a week after I had put on my last 7 day pain patch.

On Friday I got an email saying the pharmacy had received my prescription and would process it. The following Tuesday I get a message that the pharmacy had a question for my doctor on the prescription and had not heard back from him. I contacted my doctor's office again. Then I heard back from my doctor on Thursday that said they had spoken with my pharmacy and they would mail it out that day (liar, liar, pants on fire).

Saturday AM, I got a message with the USPS tracking number for my prescription shipment. No tracking info yet. Sunday, I found that it was in Philadelphia but on its way to its destination. Monday morning, it had reached Massachusetts but no more information. Finally it showed up in my mail box today. I have been home from vacation for 16 days which means I have been on my 7 day pain patch for a paltry 11 days.

Yes, I have been a bit 'uncomfortable' for the past few days - its been hard to get comfortable or sleep. Yes, I could have requested the new prescription while I was on vacation and put it in as a separate request so it didn't end up at the wrong pharmacy.
Yes, I could have checked my email and saw which prescription was delayed at my local pharmacy and I would have caught the problem earlier.
Yes, I could have checked my email and realized that the mail order pharmacy was waiting on my doctor.

So, yes, I was a victim of my own stupidity. But now I have my new pain patch on and am feeling much better.

Saturday, August 25, 2018

It Might Have Been A Mistake

My husband and I got a brilliant idea - let's go have fun. I mean why not? People should have fun regularly - its good to do things you like to or new things with someone you like to spend time with. But I am not a 'normal' person. I might have a few 'medical conditions' that require treatment and constant medication to keep me stable.

However, I wanted to go have fun. My husband agreed. Last week I was doing some planning and thought we need to do more fun things. I found some local festivals that sounded good. Now festivals are not the best thing for people who can't stand around, wait in line, or over do things. But sometimes I need to push myself a little bit to get out of my deep ruts of sheer laziness.

My husband has always talked about going to see a Celtic festival or Scottish Highland Games. There are a couple of those around. But the big one is expensive, hotel rooms sell out a year a head and just sound too much for us.

But then I found a smaller festival in its 20th year - Quechee Games - Scottish Festival and Competition. The only catch is it is more than two hours away and only goes from 9am - 4pm. We said there was no way we are getting up on and out of the house by 7am on a Saturday morning so we went up the night before (last night), stopping for dinner on the way. We got to our hotel just after 9pm and went to bed.

This morning we got up, had breakfast and got to the festival as it opened. We set up our chairs and watch the competitions - the things we had never seen before. eventually we moved and stood and watched the parade of clans, piping bands, and some highland dancers. My husband stood in the long line and got the food while I stood in the short line and got the beverages ( a good ideal I think).

After we ate, we watched more competition - caber tossing anyone? I am sure I can't toss a telephone pole around at all and these competitors showed it is much harder than it looks.

Our plan was to stay until 4 when it ended. However after lunch, about 130, I started to fade. I told myself I wouldn't think about leaving until 230 so we could watch more of the competitions. I could have fallen asleep in my chair. I was that tired. We left close to 3.

While I greatly appreciated the opportunity to have some fun, do something different, and spend quality time with my husband. I was exhausted. I have been in bed since we got home. My big ambition was to order pizza delivery since we were home.

It might have been a mistake but I really appreciated doing something new.  We don't get to do that very much any more. I may regret it tomorrow..... But I think the benefits of going out and doing something new and different outweighed the potential downside. Even if it costs me a couple days in bed.

Thursday, August 23, 2018

Post vacation

My life has its ups and downs. I went on vacation for two weeks and paid the price after. I had a whole bunch of doctor appointments and took my mother to her doctor apointments as well. I also did a million loads of laundry, unpacked, cleaned out two weeks worth of weeds in the garden, and ran out of oomph several times.

Between this week and last week, there have been at least three times where I just had to physically collapse and lie down for a couple of hours because I was that tired.

A vacation is restful right? Well sort of. I did more than I should several days by doing things I enjoyed. Every day I took advantage of my mother taking a nap to lie down for a while myself. I also avoided the stairs and stayed downstairs as much as possible. But did over do things many times.

So to complicate our return, not only did I have to recover from a fun but energetic vacation, I had to take care of everything else. I am tired. I will be in post vacation recovery mode for a few more days. This means I will spend a good amount of time lying down, reading books or knitting. Any good books out there?

Tuesday, August 21, 2018


Is being klutzy a chronic disease? I mean its never going away and severely complicates my life sometimes. Granted I can be considered a little 'fragile' or something, but adding klutziness (and forgetfulness - but that's a story for another day) can really complicate things.

I have never been the most coordinated at many things. I have been known to walk into a wall, miss a doorway, or miss things all together. Its been a lifelong condition. And my health issues don't add to it.

I have had several 'klutzy' episodes recently. I fell on my knee a few weeks ago (still healing and multiple doctors have commented on it and express their concern over it). I also caught my heel on the screen door and had a lot of pain and a lot of blood from a 3" scratch. I was weeding the other day and grabbed a thorn bush in addition to the jewel weed I was wripping out gouging my fingers. I also touched a hot pan by accident.... And the list goes on.

Normal people can do this stuff and walk away. Me? I can end up in bed for a day or two. Sometimes I need to modify medications to reduce the chance of infection from scrapes and cuts. A good jolt from a fall and I am done from the day.

But I know I don't want that 'fall risk' label from my doctors. I try to be vague about it when discussing 'klutzy' incidents - except with my orthopedic surgeon because he allows me to blame my knees that like to give way whenever they want. (If you become a 'fall risk' you aren't allowed to go pee without supervision.)

So my klutziness is another chronic ailment.... There is no real treatment but I will continue to live with it as long as I can.

Friday, August 17, 2018

Those Stressful People

We all have those 'stressful' people and those 'stressful' situations in our lives. And when the two combine so you have 'stressful' people amping up a 'stressful' situation, the drama can be overwhelming. Especially when you have a chronic ailment (or seven).

I have learned how to cope with this. Through avoidance.

If I am stressed because for any reason, I let me become harder to reach. (I am spilling a secret here.) I go into snooze mode. If I am having enough problems with my own emotional or physical self for whatever reason, I tend to 'miss' phone calls, texts, and emails. I don't get back to people for a few hours, days, weeks, depending on the situation.

I will check to make sure there aren't any real disasters or medical issues that I need to deal with, but otherwise they go into snooze mode. This is my way of lowering my stress level and allowing me to cope with my issues. Also, sometimes a quick reaction is not the best in a difficult situation.

Honestly when I am having my own issues I can't cope with yours. So please don't make me. Its not that I don't want to hear from you but sometimes I just can't even talk on the phone or send a quick text or email. I need to go into my hibernation until I can cope again.

Chronic illnesses complicate a lot of things - especially relationships. But please don't blame me if I can't cope with your situations and drama right away.

Sometimes I Ignore My Health Issues

I just spent a few days ignoring my health issues. I had a lot of fun. I know am recovering. I didn't do anything stupid - like drive a ...