Tuesday, July 9, 2019

My stellar health and other complications

After 12 years and more medical visits than I care to count, I don't have a new normal. I don't know if I will ever have a new normal. (I think that is just a pile of crap - saying that you get to a new normal and 'tada' its over, you are done. A nurse said to me when I was diagnosed with breast cancer that it would be a year of my life to get through treatment and then I could move on.) Sorry, it didn't work that way.

12 years out from a breast cancer diagnosis I now have rheumatoid arthritis, fibromyalgia, a bad back (degenerating disks, dessicated disks, and a bone spur in my neck), two bad knees, cancer twice before 50, had my gall bladder out for gallstones, and a hysterectomy before breast cancer because of fibroids, and more.

I can't do much for fun these days because I end up paying the price  - whether its 30 minutes of gardening followed by a two hour nap or a trip to the gym followed by off my feet for the rest of the day. A day at the beach is usually followed by a day in bed. I over plan my life to allow for rests and naps.

I used to be fairly shy about talking about bodily functions but with all this medical crap going on I think I can ramble on about a lot of different things simultaneously - there is not much that is too icky to discuss at this point.

Because of my medical history (do I hate that term or what?) I am not eligible for things like life insurance, clinical trials, newer biologic treatments, surgeries which might help me in the shorter term, etc.

So where does this leave me? I think I have the equivalent knowledge of a medical degree in some areas because I live with all of it. I prioritize my health first at all times. I can be very whiney when forced to do more than I am able. When I say 'no' I really mean 'no'. I only selectively listen to my doctors because they all contradict one another or tell me to ask a different specialist about something they can't answer.

And most importantly my emotional health is just as important as my physical health - that really took me a long time.

With my stellar health under my arm, I go from one medical misadventure to the next and drag along all my baggage. But I'm still here, between naps.

Friday, May 24, 2019

Hypochondria, Paranoia, or Normalcy

In recent months I have wanted to be more proactive in taking care of my health. Unfortunately this has meant that I have more doctor appointments. One of the doctors I chose to see is an allergist.

Back when I was a teenager, my pediatrician told me I was allergic to Penicillins. I didn't give it much thought at the time. A few decades later I was put on Amoxicillin for a dental infection. I ended up with a full body rash and hives (while on a business trip in Europe) so I stopped taking it. I put penicillins on my medical record as an allergy.

Over the years, I have added more meds to the list. At my first chemo infusion, I reacted to the benadryl they gave me and was told to never take it again. Other meds have been added. But sometimes my doctors would ask me about them and question whether they were a true allergy or not.

In the past decade, I have found that sometimes while outside my nose starts running like a faucet. This annoys me to no end. So I decided I need to find out what I am allergic to and then figure out what I can take so that I can end the runny nose businesss. Yesterday I went to the allergist.

One of the things they first told me is that over time your body changes and what you might have been allergic to once you no longer are. They started by testing me for penicillins. While I didn't have a real allergic reaction I did feel my skin crawl and felt pretty crappy during the testing. We have no idea why that happened. But at the end of the day the allergist told me that she was taking penicillins off my list of allergies.

I will go back in a few months and get tested for environmental allergens and see if I am really still allergic to Benadryl.

In the meantime I wonder if my obsession with allergies is really hypochondria, paranoia or just my supposed 'new normal'.

Wednesday, November 28, 2018

Its been a while

I haven't blogged in a while because I ... I actually have no idea why. I have been going through the motions of life. I have had some highs - my health has not had any significant new 'bad' things nor have my current 'bad' things decided to act up much. Yet. (There is always that possibility.)

I have also had some lows - a college friend died of leukemia (that was horribly sad) and I have another friend currently dying of breast and stomach cancer.  So emotionally I have been a wreck but I think I have been hiding that part. But I am getting it under control. A big step is getting to my meds therapist next week to talk about options. Did you know that the more chronic medical issues you have you may need more emotional care? (I am not a professional but it is my personal opinion that your emotional you is just as important as your physical you.)

It is also a busy time of year for me. I have no income but I do knit and weave and sell stuff at craft shows from late October to mid December in an effort to buy more yarn. And to get out of the house and see the world.

But it is a struggle. I am working my way through it as usual.

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.

My stellar health and other complications

After 12 years and more medical visits than I care to count, I don't have a new normal. I don't know if I will ever have a new norma...