Cancelled Due to Pandemic

Life as we know it has been on hold for a while. Like since early March. Everything has been cancelled due to the pandemic. We are sick of it. But some of us still get sick. Now the doctors are concerned that people who are getting sick aren't going to the ERs when they should due to fear of Covid-19. This is a real problem. If you need medical care, you should go get it. 

Unless you are me. None of my doctors want to see me because I am immunosuppressed. I thought I was immunosuppressed due to my RA treatment but the doctor I spoke with today told me that its something about having RA (and some other ailment that I can't remember - maybe Lupus) screws with your immune system so you are super immunosuppressed. How wonderful. 

I am feeling neglected by my doctors in some ways. I haven't seen a doctor in months - a very unusual event for me - other than by video or over the phone. I haven't had any of my regular blood work - I usually have RA blood work done every 6-8 weeks, thyroid bloodwork every 6 months, and fasting bloodwork was due in May. No one is concerned about my missing blood work either.

And it would be wonderful if my pain management doctor would schedule me for steroid injections to help with my back. But I sent him a message a few days ago and I haven't heard from him. That would be nice but that would mean going to the hospital where no one wants to see me. 

So I am going to hang on to my medical schedule and hope it doesn't get cancelled due to the pandemic too.

Okay, (I Wish) That's Enough Quarantining

But its not enough. We need more quarantine. We still have lots of people getting sick with Covid-19. But now they are in new places than before. So areas that thought they had escaped the Evil C-19 are now finding that they did not escape and are seeing huge upticks in positive results. 

Yes there is the mentality of "close your eyes and put your fingers in your ears and it will go away" as Anderson Cooper stated earlier this month regarding the Trump administration's statement to stop testing so we don't get anhy more positive results.

I get that. If I could I would close my eyes and stick my fingers in my ears and erase my entire medical history. But I can't. And Trump can't. (But this is not a political blog so I am going to shut up on that one for now.)

The point is we are all really sick of this pandemic quarantining. We want to do normal things - like go out to dinner, go shopping for new summer clothes, or send children back to school. But we still need patience. 

In case you forget about neeeding more patience, go read the news about the 16 women who went out to a bar in Florida and all ended up with Covid-19 or in New Zealand where they thought they had erased Covid, now has new cases or in China more cases appear but they claim its under control. What this means is even though we thought Covid was getting under control, but its not. Its still around. 

So we still have to be patient and wait for a vaccine, better treatment, etc. 

But that's for all your normal people. 

I am, as many others are, immunosuppressed due to my health. This means when a normal person gets a cold, I am sick in bed for at least a week. My thought is that if I got Covid, I would end up.... I don't even want to think about it. I have developed a huge fear of the idea of a mechanical ventilator.

So you may think you need to be patient but I need to be really patient. Like I think I will need to live like this for quite a while.

Examples are that I am not sure when, or even if, I will ever get on a plane again unless there is a vaccine. It could be a death sentence for me, and a lot of other people. 

We need more quarantine. We need more patience. If we do start going out and stop wearing masks or social distancing, we need to make sure continue to protect those of us who need more quarantine. So if you do go out, please remember there are people who are still stuck at home for more months and do your best to slow the spread.. 

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.