Crap in life

So currently I am waiting for the following:

I am finally getting dental implants started in my jaw. I fell in June, knocked our 3 teeth. It was supposed to be Friday but the surgeon's mother died so it's delayed until next week. It's been months so I will suck it up for now. 

I am still waiting to hear from medical insurance so I can have a temporary block done on my lower back so I can finally have the regular one after that. I saw the doctor oct 11 and I called today to find out they are waiting for health insurance approval that should have happened by now but hasn't. They gave me the direct number to call and told me it should be any day now. Never-ending that I really don't need the test injections but (because of my medical history and we moved they need to be sure it will be covered... I'll wait....

I had a biopsy done on a chronic mouth sore. The doctor said he would put a rush on it and that it should be a week but might be as long as 3 weeks. It's now 2 weeks and five days and no word yet.

I have a fluid pocket in my abdomen, found on a back MRI, so my PCP wants me to see a gyn. I waited over a week and called. That will be Dec 22. Just a couple of months away.

I am waiting and really sick of waiting. 

Effing doctors, insurance plans, and all of that. I am in mood to consider medical teams to respond to me.

But yes I am extremely healthy, in case you wanted to know

 .  

Time Flies When You Aren't Having Fun

Over a year ago, I came up with the brilliant idea that my husband should retire in the fall so that someone who is supporting a family could keep their job in case of lay offs and he would retire. My dream has always been to live on the ocean. His retirement dream was to live in a log cabin on a lake with a view of the mountains. Now we live on an ocean front house (not a log cabin) in Maine on the ocean which has one floor living for me. It also has my husband perfect house requirements - a two car garage and a fireplace.

We closed on the house in January (call me slow, that's okay) and moved in early March. The truck showed up about a week and a half after us but we are now settled in. We have a lovely view of the ocean. Nice big rooms, and all on one floor.

One of my biggest concerns in moving was having medical care. I have been going to the same medical facility since my first cancer diagnosis in 1981. I became a patient when the hospital was only a few years old. We all had to stand in one line at the front desk to check in at the beginning. Then it became two lines, three, and more. Then we could skip the lobby and check in at the department we were going to. The hospital had two sides - east and west. Then they added a side so they had east, central (formerly east), and west. Then we no longer had to park in the parking lot, we had to park in the garage (and pay) and they added southeast (which is where you got chemo on level 3) and fancy rooms on levels 6 and 7. 

I could explain lots to employees in recent years. They had no idea. Now its all different.

We moved to Maine. Its wonderful. (I dont eat lobster every day but as often as I want.) Seriously in Maine people are like people everywhere, they only eat lobster when they want - stop profiling.

I spent four months looking at houses on line after I got my brilliant idea. Then my husband explained to me that there was no reason to move from a pretty good house to another pretty good house unless it had a wow factor. That was eye opening for me and a good reassurance on what we should do. Seriously, why buy a new house when you have a perfectly good house unless you have a reason? We needed a house with a wow factor.

But I also need medical facilities. I have lots of doctor appointments. I really don't want to drive two hours to every single one. Then there was a new article on a hospital that opened a new facility for primary care and was continuing its expansion. That's what I needed. And expanding medical center that could provide me with the care I need. Awesome. And we found the perfect house with the wow factor that should last us 20 years. We packed up and moved.

Whoa!

New state. New hospital. New laws.

Its so confusing. But I am working with everyone to help figure this out for me. I have several new doctors. I will have more new doctors. But I feel okay about my health. I have been pretty stable for the last years. I brought many medical records to my new doctors. I was given a six page form from my PCP and added another four pages of details that didn't fit on their forms. I told them that my old doctors are happy to talk to my new ones.

But here's the difference. My new PCP moved to Maine a few years ago. In the state she  used to live in she coudn't prescribe several of my meds. But then she found out she could. But I have to see her every 3 months. But my other doctors I can see a lot less often. 

I can work with this but I also need to learn to talk to new doctors. And they got a new phone system. I hate going to doctors. But Im still here so I'm okay.

This has been  a LOT of CHANGE in the past six months. I don't even notice it as much but on some level I realize they need a lot of my information. 

Life Moves Us

We are moving to Maine in a few weeks. I am looking forward to living in a house with no stairs so I can get around easier. I will have a weaving/crafting/knitting studio as soon as my husband finishes it - the building is there but needs insulation etc.

The scariest part of moving to Maine is I have to get new doctors for the first time in 40 years. Well its been 39 years and 8 months. I called up to get us new doctors and set up first appointments. They sent us paperwork. Everywhere it said things like: 'surgeries', 'ailments', 'medications', 'specialists', etc. I said 'see attached'. 

I called again and asked and the regular new patient appointment is 30 minutes and 'the doctor will book additional appointments as needed'. The last time I got a new primary care, she split up my annual physical into 2 hour long appointments. I was healthier then.

Okay, why move? Because the quality of life will be better. Maine has way fewer cases of Covid. I can't get a vaccine any time soon here so I hope by the time of my new physical, I will be able to get an appointment then. 

Paranoia

Now that we are more than six months into this 'stupid' pandemic, the proverbial 'they' say that more people are suffering with pandemic fatigue than anything else. Basically we are fatigued with this pandemic.

I have sort of been ignoring the damn pandemic because I don't have that much of a life anyway. But I have been following the rules and trying to live my life without driving myself or my husband crazy.

And then....

I got a cold. And paranoia set in. 

Is it Covid? I took my temperature, 99 point something (which is on the high side for me because usually I am around 97 point something). I think not bad, I'll take a tylenol. And stay in bed, have soup, and watch lots of bad TV. 

Then I start thinking: where have I been in the last 14 days? Too many places. If I have Covid, will I be branded as a 'bad' person for the rest of this damn pandemic because I went lots of places in the last 14 days? I must be a horrible person for doing all that 'traveling' and exposes all sorts of people to my germs.

Then my next thought is "I went to the grocery store (a real swamp of germs that late in the day) Thursday afternoon and probably got exposed to someone's non-Covid cold". Presto, with my immunocompromised body, I started showing symptoms within 24 hours. 

So of course I posted on 'height' of social sharing, Facebook, that I had a cold during a pandemic. An amazing number of people actually read my post and many of them told me to get tested. 

So I started thinking more. If I do have Covid, I will probably die from it because I am so immunocompromised. So more paranoia. Will I die from this stupid virus? Not a good thing. 

Thus, I put in more deep thoughts and contacted a local clinic to see if I meet the criteria of needing a Covid test. I put in my symptoms on line. I spoke with a person who asked more questions. Finally I spoke with a doctor. His reply at the end of more questions (have I lost sense of smell or taste?), it is my choice to get a test or not. 

I'm going to get a Covid test. I really doubt it is Covid because it just feels like another cold to me. But because of my concerned friends and my personal paranoia (and the fact I really am not interesting in dying), I am getting tested now. Results in 24 or so hours....

Trying Something New

 So as you know I am not a very healthy person. In fact, I might be one of the least healthy people on the planet who is still alive. 

In late 2008, I started experiencing back pain. As usual I ignored it for several months, until I realized that I was living on tylenol and advil. That sent me to my doctor, who sent me to a orthopedic guy, who took xrays, and told me a bunch of different things. He also gave me some drugs and sent me for PT. But I still had a lot of pain. Eventually I ended up at a pain management doctor. 

Sometime in there, I thought, maybe I should try pilates or yoga to help my back. My pain management doctor told me no. So I listened to him and didn't try either. 

A few years later, I got sick of him just changing my meds with out telling me why so I got a new pain management doctor who communicates with me. I have learned over the years, that things that I should not do include twisting my back and standing for too long. I feel comfortable with living without twisting my back and standing too long.

I went to a good gym for close to ten years. I got a lot of flexibility and strength out of that. Then along came this (stupid) pandemic and the gym closed. I am not going back to the gym even though I could. Too many people breathing hard and I am immunosuppressed so I am very susceptible.

When the pandemic started, I took my mother's exercise bicycle and started riding it for an hour 3 times a week, just as if I was going to the gym 3 times a week. But I wanted some other types of exercise for core strength and flexibility. 

I have a knitting group at a cancer support center which went completely remote in March. They offer yoga classes. Last week I got the new schedule for events at the cancer support center and decided its time. 

I signed up for yoga. I actually signed up for two yoga classes each week for a month. Yep. I did it. The first class was this morning. I made a point to get on early so that I could talk to the instructor and tell her I can't twist my back or stand for too long. She said that was fine and to do what I could. I skipped all the twisty stuff. I think I did okay. I mean I tried. I didn't twist.

I just have to wait to see how I feel tomorrow to see if I can move. 

The Damn Cough

At the end of February, before Covid, I sat next to someone who told me she was fighting a cold. Well I got that cold for the next week. I then had a basic cold for a week since I am immunosuppressed. (I did not have Covid symptoms of lack of smell, fever, body aches, sore throat, or trouble breathing, etc) I felt like crap, spent a lot of time in bed, but I had to plan and go to my mother's celebration of life which I did. I finally felt better after about 9 days. 

But I had a cough afterwards. It would mostly bother me at night. And it still does. That is nearly 5 months later. I still have a cough.

It is annoying me. It annoys me enough normally I would call my primary care doctor and go to see her. But with this current Covid stuff, I am concerned.

What if the cough is a follow up from Covid that I had without knowing back then? I am petrified that will be the case. I mean what if my doctor wants one of those nasal swabs that tickle your tonsils? For some reason this really terrifies me for some reason.

The rational side of me says that it was not Covid because I hadn't traveled. No one I know has traveled. The group of people I was with are people dealing with cancer. I know that it was very early in the Covid era - before it was spreading around. So the chances it was Covid are very small.

But the damn cough is really annoying me. I get up most nights to take some guafeisin so I can sleep. So the rational side of me tells me I need to call my doctor. I promise I will this week.

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.

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.

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.

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.

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?

Klutziness

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.

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.