Tag: Christmas with Chronic Illness

Christmas + Chronic Illness + COVID = X

On By WendyIn Christmas, Chronic Illness, Chronic Pain6 Comments

After being told, erroneously, that this would be my father-in-law’s last Christmas we decided to brave things and try to create as many memories with him as possible. That included having family gatherings.

We all got together for Thanksgiving, during which I found out that 3 people in that group are not vaccinated. I tried to be as careful as I could, but I felt the whole day was irresponsible, and scary.

Now we know that what’s wrong with Dad’s heart will most likely not shorten his life span, we aren’t feeling the need to get us all together again. At first I thought we still should, after all he’s 84, who knows….who knows about any of us really. But now I’m thinking, do we want our memories to be about all of us having COVID? I don’t think so.

I just got back from my physical and my doctor told me that we need to celebrate the best we can, and still be cautious. He told me to stay away from unvaccinated people, especially indoors. The hospitals here are at near capacity. It’s bad.

So a family Christmas is out this year, and I’m okay with that.

I saw a show the other day where a child was trying to share what Christmas meant to an alien. (Dreamworks Home For the Holidays on Netflix) As the story went on the alien tried to share his joy with his fellow aliens, but they didn’t get it and they were really just making a big mess. (much like all the garbage created by Christmas now) Finally the girl realized, Christmas isn’t about all the things, or family, or gatherings, or any of that….Christmas is a feeling. It’s the feeling of magic, kindness, giving, love, joy…..it’s the feeling of having goodness you can believe in.

I like that.

There are so many celebrations this time of year, I kind of put them all under the umbrella of Christmas, it seems others do too.

I want to send glad tidings to you all, no matter how you celebrate the holidays…or don’t, that’s okay too.

Have the best celebrations you can, while still being careful out there.

This year, we’ll do much the same as we always do.

Rainbow lights strung on a wall in a tree shape, with a star on top.

We have our unconventional tree, that includes everyone. (that’s why it has a rainbow glow) We will still watch It’s a Wonderful Life on Christmas Eve while eating Chinese take-out. Still putting together our Peanuts Christmas puzzle and build our various Lego Christmas things (train, tree, Santa….). That should keep us busy! Maybe I’ll even make cookies!

When you are celebrating the holidays remember, it’s not about getting together with family, the gatherings, or any of the preconceived notions that have been pushed down our throats. (Could there possibly be any more romantic Christmas shows?) The holidays are about the feelings. They are about caring for each other, those you know and those you don’t. It’s about giving, not receiving…but I admit receiving that magic is pretty darn special. Let the magic shine in you. The other day while S was working I closed myself off in the studio, played Christmas music and sang at the top of my lungs! I worked on little art projects and just had a magical day, all by myself. It was actually the most magical feeling. Unfortunately I think I’ll have Christmas music stuck in my head until July! Oy Vey!

Please remember that everyone is going through something we don’t see, be kind, reach out if needed.

The holidays is a time when so many are lonely, and depressed. They can’t feel the magic, they can only see how they are left out of it all. Some are sick, poor, or simply alone. If you are feeling this way, please reach out. If you notice anyone feeling this way, or suspect it, reach out. Sometimes simply letting someone know you care and they aren’t alone is enough to help them through this tough time.

Merry Christmas to all!! And to all a Good Night!!

**Little Mini-Me update….the migraine is still here. I had my physical yesterday and my bloodwork looks great! My BP is great! I still hate having High BP disorder in my records, but oh well, at least it seems to be down now….maybe. I saw the retina specialist last week and he said my BP had to have spiked sometime since I saw him last because the vein leaked again. I noticed my vision was worse, but thought it was just that it wasn’t going to get better, not that it was actually worse…that didn’t make much sense did it? So I got another shot in my eye, I’m seeing better! Hope it stays that way, I go back in a few months. I saw the dentist this week, it had been a while…before lockdown….things weren’t horrible, but not as great as I would have liked. I need to see a TMJ specialist because I’m grinding my teeth and she thinks it might be contributing to my migraines. I also have a Tilt Table test set up for the 28th, this is at the clinic in Phoenix. I realize this is a stream of information, I hope it makes sense. Oh, found out yesterday that my therapist is retiring in March. I’m sad about that. I feel like I’m losing a good friend.

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Ready for 2020?!

On By WendyIn Chronic Illness13 Comments
Image by Gerd Altmann from Pixabay

I’m baaaack! Whew, I didn’t mean to be gone so long. I actually did write a post during my absence, but, silly me, I forgot to hit “Publish” and it’s out of date now.

Let’s see what was going on when last I left you?

We were getting ready to move into our house. Check, that happened; there are still plenty of boxes and there is actually more to move from Stuart’s dad’s house, but we are in OUR house and it feels good, even if I’m extremely exhausted and flaring.

I had hopes that the nerve block injection I had in my neck was working, but it didn’t. I had a couple of good days, but I think that may have just been good days because it sure didn’t last. I saw the pain doctor again and I had an occipital nerve block on the right side on December 30th to hopefully help with my migraines. I actually do think this one is working. I have had migraines since the injection, but they did not start in that area. That’s great, because a LOT of my migraines do start in that area. It hasn’t been long, but so far I’m hopeful. I also had an x-ray of the thoracic region of my back and it showed no damage; I have to say I was surprised. I have so much pain in that area, and it feels like it comes from the bone. I’m happy I don’t have problems there, but I do wish I knew what the heck is wrong. It’s really hard when you can’t have an MRI. She also wants me to have a nerve conduction study to see what may be causing my arms to go to sleep since the nerve block in my neck didn’t help. I’m not looking forward to that test, it’s not very comfortable (to say the least), but hopefully it will provide some answers.

Right after my last post I had a severe gastritis attack accompanied by severe diarrhea (literally crapping my pants over and over. yes, I know, TMI). I had my yearly physical right after that and my doctor thinks I may also have diverticulitis. I’ve been referred to a gastroenterologist, but haven’t heard from them yet. The day of our move I woke to the all too familiar feeling of gnawing pain in my stomach, luckily it didn’t escalate to a severe gastritis attack, but it was a very uncomfortable day.

I can’t say much about the holidays because it is just a blur. I know they happened because of all the decorations in stores and specials on TV, but boy oh boy we sure didn’t have time to celebrate anything.

So now I am ready to say goodbye to 2019, and face 2020 with renewed hope and wonder. I plan to take each day as it comes, have more fun, and take things less seriously. I’m not going to make up a bunch of resolutions I probably won’t be able to keep, but I do want to face this year feeling a bit renewed. After all, I just moved into a new house, my life is drastically changing. I’m going to be changing places I normally do my shopping and even some doctors…because we now live on the other side of town. So much is changing, there is no need for me to make resolutions, things are just going to change naturally. However, I do plan to make some short term changes throughout the year. There are some things I want to try so I plan on doing some 30 day challenges for myself, perhaps some of them will last longer, I’m sure some won’t last the whole 30 days. For example, for 30 days I want to eat vegetarian, to meditate daily, to journal daily, to draw daily, to not eat out, to not buy anything new except food… Well that’s 6 months right there! I’m not going to be hard on myself if I can’t keep to these things, but I feel like if I put a short time frame on it then I can just try it out and see if it’s for me, who knows it may be something I just love and will keep doing forever, or it may be something I hate and quit in a week, no pressure.

I think that’s enough to get things updated and to get me writing again. It has been one crazy busy month! Not only have we been moving, during the holidays, I had 1-3 doctor’s appointments each week. It’s time to slow down and get this year started.

Happy New Year everyone! May this year be filled with love and happiness for you all.

New look and a Mini Me, Update

On By WendyIn Chronic Illness9 Comments

I hope everyone had a magical holiday season. I hope you didn’t kill anyone. I know I wanted to a few times. Luckily it ended when it did.

I’ve started a new look to my blog, I will probably change the photo soon, but I wanted a better font and line spacing, especially with the new way WordPress is making me format post now.

Thought I’d give you all a little health update since I left things kind of up in the air. My infections seem to be all gone, or at least almost all gone, no worries about that anymore! Yay! But my tests showed that I have an obstruction in my kidneys. Yes, I said, “kidneys” plural. I don’t know what is going on. I had an urgent referral to a nephrologist, but they seemed to not think it was urgent since I don’t have an appointment until January 7th. I have been told that if there is a change in my symptoms to get the ER immediately. Okay, I can do that. I’m thinking this was caused by inflammation from the infections and it will clear up, possibly on its own? (one can hope) Maybe that’s why they weren’t worried about getting me in there sooner? I did have a pretty severe pain yesterday, I decided to drink something other than water and very weak decaffeinated tea and my kidneys screamed in response, so did my bladder. Maybe it’s not just inflammation?

We had a very quiet Christmas. We had breakfast with Stuart’s father, and we watched holiday movies all day. I ate entirely too much the past couple of days. It’s obvious there is something going on there. I simply can’t stop eating. Either this new medication is making me crave all kinds of crap, or I’m not dealing with things as well as I think I am. Maybe it’s a little of both? All I know is that if I’m not eating, I’m thinking about the next thing to eat. (if I’m honest, I know I’m not dealing with everything well, I still have this underlying anger that wants to break through often. My husband has the patience of Gandhi. I don’t know if I would put up with me for this long. He says it really hasn’t been that long, it feels like a life time to me.)

We ended up canceling our rescheduled Christmas dinner too. That has been hard on me. Not really that we had to cancel, but that it is going to be very hard to plan it now. and the decorations would have made it very festive, what am I going to do with that empty spot in my corner where the tree was? We moved the furniture and now there is nothing to put there. hmmm. Luckily I like minimalism. We decided we just shouldn’t try to do all of that when we don’t know how I’ll be feeling. So I’m waiting until after I see the kidney doctor before rescheduling. We decided to make this dinner much more laid back though, spaghetti with salad and bread (all gluten free of course). Everyone was all on board with this too, amazing! Most of the time I’m hit with…so and so won’t eat that…it’s hard when you ask and ask what people can and can’t eat and then when you make plans you hear that it’s not right. This might be the last dinner I plan. I now understand why they all go out to eat so much.

There is still so much drama here that it makes my head spin. I’ve just been lying low and keeping to myself. Stuart worries that I need to be more social. Maybe when I feel better, but right now, as long as we get out for a little bit once a week, I’m good, just curled up in my chair with heat on my abdomen and/or back, I’m good to go for now. I’m worried about him, he’s been awfully depressed lately. I think this move took a lot more out of him than he wants to admit too, and he’s worried about me…darnit.

Well, it’s getting late and I find myself rambling so I’ll close for now. I do find myself rambling much more lately, can’t stop talking, a sure sign that I’m still dealing with mania, but I don’t like this new medication. It has too many side effects and too many things that can go wrong. I hope there is another option. I see that doctor late January, she took a lot of time off for the holidays and I had to cancel my last appointment right before she went on vacation because of the kidney stuff. I really need to see her though, we called and I’m on the wait list, hopefully an appointment will come available. We also asked for orders to get my blood drawn, since you are supposed to do that within the first month of being on this medication to make sure your live is okay. Got that yesterday, will be having it drawn tomorrow.

How’s everyone out there? I’m looking forward to having some of these things resolved soon so I can start the new year on a healthier note. I does seem that I either go out of a year feeling like crap or start a new year feeling like crap. Within the first hour of this year I had a cluster headache (and every day since) that’s a sure way to start the year off with a dud. 😉 I’m sure that it will only go up from here.

I will just stop and be thankful for all the support and love I have.

and just breathe.

Canceling Christmas and that’s okay.

On By WendyIn Christmas, Chronic Illness7 Comments

Today we are officially canceling Christmas dinner. We were supposed to be hosting dinner for the family at our house this Saturday night, but plans needed to be changed because of my health. It was hard for me to admit it at first, but finally I realized, even if, by some miracle, I could get it all done, I would not be well enough to enjoy it. The probability that I’d end up in bed during the whole thing was high. So, as I prepared to have a “talk” about cancelling Christmas with Stuart, he proceeded to tell me that he felt we needed to do so. So glad we are a team.

For years now we’ve worked at making Christmas our own. We stepped back from the hustle and bustle and spent time together doing our special things. This year, we are in much closer proximity to his family and I really wanted to do something special for his dad, so Christmas dinner was planned. Then I got sicker and sicker with a UTI and more, and suddenly this Christmas started to feel like an albatross around my neck. I desperately wanted it, but my health simply did not agree, and I’ve come to understand that it’s perfectly okay to cancel plans when you need to. If anyone is disappointed or upset because of this change of plans, then I’m not sure I’d want them at my house anyway. (We are going to try to do the dinner on the 29th, but if I can’t, I can’t. Playing that one by ear.)

I feel like this whole experience has made me get back to my mindfulness practice, and Buddhist studies (I consider myself Buddhist inspired). Letting go of the plans for Christmas, not focusing on what may be with my health, just living life moment to moment as best I can, that is where I like to be, I feel like I lost that somewhere along the way.

Mala Beads.

For the past year I’ve had this bracelet that helps you meditate, it is based on Mala beads, but on a much smaller scale. Mine has 21 beads, where a true Mala has 108. Mala beads are used to count mantras when meditating, I think if it kind of like a Rosary. I have used mine at times when I have a few moments to meditate, I simply hold a bead between my fingers and take a deep breath in and out and then move on to the next bead. Sometimes I’ll focus on counting, or a single word or phrase. It has helped me with anxiety and being centered. I realized just how much I had gotten away from my mindfulness practice when I stopped using my beads. Recently I had a mammogram and I had to take my jewelry off, I had almost everything off already, Stuart was holding it for me, but I had my beads on. I had to take them off, so I put them with my clothes. When I got home I realized I didn’t have my beads. They are very inexpensive and don’t look like much, so no one would have saved it. I was devastated. I had just started using it again and it was helping me through this tough time, and suddenly it was gone. I ordered a new one, but it was different. It didn’t feel right. This week Stuart surprised me with a new one just like my old one. I will be using it often now, I’m so very glad I found this way of simply letting the world go for a little bit. I often get anxious when meditating because I can’t tell how much time has passed, by counting my beads, I have a know that completing one round is a good amount of time, I used to be afraid I’d look at the clock and only a minute had passed, this is a perfect solution.

Another tool I’ve used for a long time that I’m using more often now is chanting. This is not for everyone, some find it much more religiously centered. I don’t really. I do try to practice the Buddha’s teachings, but I don’t feel I really know enough to call myself a Buddhist. I try not to talk about religion on my blog, I respect one and all. I feel we all have the same basic beliefs, we want to be happy and want the same for others. In other words, do good and good comes back to you. I think you should do good no matter what, but again, I’m getting off subject. (and at this time in I’m not sure how many people agree with any of that)

About the chanting. I learned a chant when I was taking yoga, many moons ago, and it stuck with me. Whenever I have a bad spell Stuart and I will chant this chant.

Oṃ bhūr bhuvaḥ svaḥ

tát savitúr váreṇyaṃ

bhárgo devásya dhīmahi

dhíyo yó naḥ pracodáyāt

Translation:

 (O) Supreme one; (who is) the physical, astral (and) causal worlds (himself).

 (you are) the source of all, deserving all worship

 (O) radiant, divine one; (we) meditate (upon you)

Propel our Intellect (towards liberation or freedom)

I can’t really remember how to pronounce the last two stanzas, but we know the first two by heart and I find them very comforting when I’m in a lot a pain, or having vertigo so very bad. It doesn’t really matter to me what the meaning is, it’s the chant itself that helps. When in pain I chant this and sway back and forth, it honestly helps. Since I had the akathesia side effects last Spring I rock myself to sleep. I simply cannot be still. Since I’ve been so sick, I find myself repeating this mantra every night. That or the Lord’s prayer, which is kind of funny to me.

The next 2 paragraphs are all about my current health condition, feel free to skip it, but if you are interested, here goes:

As many of you will know from my previous post, I’ve been fighting a UTI since late November. I’ve been through 3 rounds of antibiotics and I had another infection from a cyst removal on my scalp that still hasn’t healed. (that procedure was done the third week of November, over a month now). You may also recall that I’ve been going through a Bipolar mixed stated mania phase, and had to change my medication a couple of times. Yesterday I saw the doctor again. I was running a fever, but not incredibly high. My pulse and BP were a little high, nothing worrisome. I have been having severe stomach pain with retching (very little vomiting, just heaving horribly) and the nausea has been so severe, I just can’t express that feeling. My bladder and back still hurt. She also checked my wound and it is still draining, but it’s yellow now. ewww. She’s a little concerned about the possibility of sepsis, since I have infections in 2 places that haven’t healed, but I don’t have that high of a temperature and I should be either vomiting or having diarrhea, and I’m having neither. I’m had my blood drawn just in case. I also had a urninalisis, so far it shows that my UTI is clearing, but I have blood in my urine, so I go to have a kidney/bladder ultrasound tomorrow morning. (At 11:30 in the morning, after no food or drink for 8 hours then drinking at least 32 oz of water before the test without peeing. Talk about torture.)

She thinks this has all probably been caused by adding too many medications at one time and they didn’t play nice together. Stopping the antibiotics will hopefully set it straight. Of course, that wouldn’t explain the blood in my urine, but why worry, it is what it is.

*the first image was created using imgflip.com the second image comes from https://chopra.com/articles/the-benefits-and-uses-of-mala-beads I believe each are open source photos.

Christmas My Way – Redux

On By WendyIn Chronic Illness7 Comments

I posted this last year and I just read it again.  It made me happy.  I hope it makes you happy too.  This year, it’s Christmas my way again.

christmas-treeWhen I was 30 Christmases as I had known them changed forever.  That was the year my mother died.  Everything changed that year.  When the matriarch of the family dies the traditions die with her.  We tried to keep things alive, we had Christmas at my sister’s house as she had the only grandchild, things weren’t the same, but they were still nice.

Then there was a falling out between me and my niece.  Well not a falling out really, she got mad at me and refuses to be in my presence.  There isn’t much I can do, not that I haven’t tried, I have.  I could speculate all day what has happened between the two of us, but at this point it doesn’t make much difference.  This has however, ruined many relationships for me in my family.  Family Christmases became a thing of the past.

After Stuart and I became a family we started having Christmas celebrations with friends, as Stuart’s family lives a long way away and they don’t do much for the holiday anyway, again they are without the matriarch.  We normally celebrated Christmas day alone, just us, but leading up to that time, we went to parties and had people over to our home to celebrate.  It was a joyous time.  Then I got sick, and things changed.  We no longer got invited to parties.  I no longer felt that I could throw a party.  Then we moved so there is no likelihood of rekindling that time.  Truthfully, we’ve all changed so much, I don’t think there could be any rekindling even if we do move back to our old city, or if I miraculously got better.  Let’s be honest, my old friends really are just that, old friends.  They aren’t a part of my current life.

The last few years I’ve tried to be okay with the holiday.  But truth be told, I’ve been very depressed.  Depression runs rampant during this time of year and I was not immune.  I tried hard not to feel bad that I wasn’t surrounded by people.  I’ve had the one person near me who means the most to me, why should I be depressed?  Because Christmas is a time for friends and family.  A time for gatherings.  It was the two of us, yet I felt lonely.  And I felt guilty that I didn’t feel that it was enough.  I was depressed and felt guilty for being depressed.

Over the past few years I haven’t cared about decorations, we had no tree.  Why hassle with it?  No one would see it.  No one would care.  We’d have a little celebration.  We’d try, but it all seemed like we were just going through the motions.  Christmas is for groups of people, not just the two of us, and we didn’t have a family.

christams-decor
a little decorations making the holiday our own

This year has changed.  No we still don’t have a family, and we aren’t celebrating with any friends.  (We still don’t have any locally)  I changed.  I realized that Christmas really isn’t about family and friends.  It’s all about how you feel inside.  It’s not about giving the biggest gift it’s about giving to those in need.  It’s not about being with a bunch of people it’s about caring for those you are with.  It’s about caring for mankind.

This year I decided to decorate.  I never go all out like some people, that just isn’t me, but we put up a tree, and did a little decorating in the house.  It has made all the difference in our home.  We are in the spirit.  I understood just how much when my loving husband was looking through Amazon and found the National CASA Association Wish List, they provide Toys for Foster Kids, and told me that if I hadn’t purchased his presents yet he wanted the money to go to buying these kids presents.  How special is that?  So we took most of the money we planned to spend on our Christmas presents and bought Toys for Foster Kids.  Realize I did say most, I decided we needed a little gift exchange between the two of us, just a little something.

charlie-brown-puzzle
this is the actual puzzle we put together

We also have other traditions we are going to make sure we revitalize.  We always watch, It’s a Wonderful Life on Christmas Eve.  This has been a long standing tradition.  This year we are bringing back putting together the Charlie Brown Christmas puzzle, and our LEGO Christmas Train.  The train will be put together this weekend.  The puzzle goes together on Christmas day.  I don’t have a lot of traditions.  We cook a few little things as the time goes on, and health permits.  We’ve made some cookies so far, we’ll make spiced nuts to give to our neighbors, we’ll make a special breakfast on Christmas day….  The point is we are making this Holiday season ours.   And if at any time I can’t do something because I don’t feel like it we can postpone until later, or just decide not to do it.  All is good during our holiday celebration.

How can you make the season less depressing and more your own?  Remember that it really isn’t about family and friends, it’s about love and giving.  Love everyone and give to those in need.  Honor simple traditions that make you happy, we watch It’s a Wonderful Life.  Make new traditions, like putting together a themed puzzle on Christmas day.  Put up decorations if you want.  If you aren’t able to put up everything you want to, then either ask for help, or try to pick out your favorite decorations and put those out.  We have a small tree, and not all my ornaments fit, so I sit my favorites around as decorations.  The point is to make the holiday your holiday now.  Don’t try to make it what it was when you were well, or what it was when you were growing up, or any dream holiday you have been trying to live up to.  Make this holiday something special, on your own terms.

Sometimes no matter how much we try to make the holiday a pleasant thing for us, it just doesn’t work, depression takes over.  For those who get depressed during this time of year, remember that you are not alone.  If you need to reach out, please do so, there are numbers at the end of this post if you are in need.  If you need a friend to talk to please feel free to contact me.

  • U.S. National Suicide Prevention Lifeline: 1-800-273-8255  If you are having thoughts of suicide, call this number immediately.
  • Kristin Brooks Hope Center Hopeline: 1-800-784-2433  This hotline can help you cope with a range of depressive feelings.
  • Veterans Crisis Line: 1-800-273-8255 (press 1)  Responders understand the unique experiences of veterans.
  • United Way Helpline: 1-800-233-4357  They can aid you in locating a therapist, healthcare or basic necessities such as housing and food by directing you to local services.