Quarantine Follies - May 1, 2020

I was going to start by saying Day 483 but I know its not day 483 even if it feels like it, so I looked at the calendar and found May 1, 2020.

As a retired person due to health problems, I do not have much of a life without quarantine isolation. In regular life, I would do the following:

• 3 days at the gym for 1.5 hours
• 1 trip to the library
• 1 lunch with a friend
• 1 trip to the grocery each week. 
• A little gardening if its the right season
• And maybe one or two more things

Now that I can't do any of that I am:

• Riding the exercise bike 3x each week, 
• Talking to friends daily
• Scrambling to find digital books to read
• Sending my husband to the grocery store with a very detailed grocery list and a show and tell session to hope that he will get it mostly right
• Weaving and knitting to use up my lifetime supply of yarn (SABLE - stash acquired beyond life expectancy)
• Being bored. Seriously bored.

I am immunosuppressed. This puts me in the very high risk group. I am not taking chances. Put it this way, if someone (like my brother - he's done this twice this winter so I can blame him) has the sniffles and is near me. I then end up with a cold that forces me to cancel my schedule for a week and stay home so I don't need to stay home for 2 weeks and end up with an ear infection.

My immunosuppression is a result of my rheumatoid treatment. Sometimes I think I take more meds than the average 80 year old. My father used to introduce me to his medical team as being more unhealthy than him. 

Being in the high risk group forces me to spend more time away from people. The only people outside of my husband that I have seen in the last couple of months is my sister. 

But on the more positive side. We are doing okay.

• My husband still has his job. He works from home. He has a work laptop and goes into his home office every day and comes out for coffee, bathroom, and food. Its like he's not here. If he was just sitting around all day, every day, things could go 'bad' quickly. 
• Because he is home, this has given us the flexibility to get necessary car repairs done - new inspection stickers, oil changes, winter to summer tires, etc without me being stuck at home with out a car for a day.

I'm not going to lie and say this is buckets of fun because its not. I am used to staying home but I really want, or even need, to see other people. Like the librarians at the library. Or the cashier at the pharmacy where I get all my prescriptions. Or going to the garden center and getting plants for my garden.

But I am still here with my sanity mostly intact. I keep telling myself I can do this and I will.

Stuck at home for weeks

I decided I need to restart my sporadic blog on life with a chronic illness. I have a very compromised immune system. I also had cancer a couple of times. But I am not over 60. So I don't have all the risks. Just most of them. Or more than the average bear...

With my lovely health, if I start to get a cold, I just cancel my life for a week. I had a cold long before this Stupid Virus Quanrantine Pandemic started.  So I basically hae been stuck at home since late February. The first week of March I left my house only a couple of days and since then have left it maybe once a week. Yes my sanity is crumbling. But I do have several things going for me in this staying at home business.

• I haven't worked in years so I have lots of practice in entertaining myself.
• I can't go to the gym, but I have an exercise bicycle so I can still get my hour of cardio in 3x each week.
• Instead of visiting my friends I have been calling and texting them regularly.
• I have been working on my garden every day (its not raining or snowing) for about an hour or so each day so I am being productive and getting fresh air.
• My neighbor's little boys have shown up for weekly garden help which has been a big help to me and they are adorable. 

But my biggest problem is THE LIBRARY IS CLOSED. I am usually there every week and have read all the library books I have. I am now working my way through ebooks even though I prefer the feel of a printed book.

Since it is now rumored (and I have to use the word rumored because they keep changing their mind) that we will be home until the end of April. That would put me at a total of about 62 days (or something around that) home straight. 

This means I should have time to do things like: clean the house since the house cleaners aren't coming, tidy up all my craft stuff, and organize the linen closet. But it remains to be seen if those tasks ever will get done.

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.

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'.

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.

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.

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.