I’m still pinching myself, I just can’t believe how much has changed recently, and all for the better. Wow…just Wow.
I’ll start with the best news first, we close on our house on the 19th and we move in on the 20th! Yes, we will be in our new home before Christmas! I’m so excited I could squeal! and I probably have! hahaha We found the cutest house in the nicest neighborhood, I just adore it. It’s not exactly what we were looking for, but I just fell in love as soon as we walked inside. The neighborhood is focused on sustainability. The houses are all energy efficient, the neighborhood has a lot of walking and bike trails, it has it’s own coffee shop, and a few other little shops. It has the greenest school in the country that also ranks very high academically. It’s beautiful. The house has enough room for us and Dad, without being too big, and it has a little casita (a detached guest suite) in the back that’s going to be my studio. And I’m going to plant a lemon tree right outside my kitchen window. Perfect.
I’m able to enjoy all of that because my antidepressant is working better. I still haven’t gotten the approval for the ketamine, but we increased the dose of the Fetzima and it is helping more, I still feel like I have this black cloud over me, but it isn’t dropping buckets of rain and hail on me all the time. I can see the sun, maybe even a rainbow.
I’ve also had a few migraine free days. Yes! I really said that! The days aren’t consecutive, but I have had one here and there. I normally do not wake up with a migraine now, I get them in the afternoon usually. I’m not having as many severe migraines. They are normally moderate in intensity, when they are severe the severe stage doesn’t last as long. For example, I might have a migraine that last 9 hours, 2 of them will be severe. I did have a severe day one day this week, so it still happens, just not like it was. It looks like the Aimovig is doing something. Yay!!
The nerve block I got in my neck started helping, not completely, but I have been waking up most days without my arm being asleep or aching terribly. Every once in a while it will happen, but most of the time nope, it’s good. My follow up appointment was rescheduled because my doctor was sick, so I don’t know what the next plan is, I’ll find that out soon.
I had planned to post much more often but I’ve been so busy with all of the house stuff, doctor appointments, holiday stuff….I am so busy! I will try to post more soon, but I can’t promise anything, the next few weeks are going to be crazy busy! I have a lot of post written in my head, I just need to type them up.
Not everything in my life is perfect, but I’m feeling so much better I can’t think of a better way to close out a really crappy year and start 2020.
“Mindfulness isn’t difficult, we just need to remember to do it.”
This time of the year can heighten both joy and despair; laughter and tears; friendship and loneliness; comfort and pain. Being present in the moment among the presents and presences can ground us as the season swirls by. Mindfulness can act as anchor, guidepost, tao. Bringing us back inside, to quiet, stillness. Mindfulness can help us do what is so important: breathe, love, live.
This week is a selection of quotes around the idea of mindfulness, grounding, coping. I hope these resonate with you.
“Mindfulness is a way of befriending ourselves and our experience.”
“Life is a dance. Mindfulness is witnessing that dance.”
“When you look into a field of dandelions, you can either see a field of weeds or a field of wishes.”
“Regain your senses, call yourself back, and once again wake up. Now that you realize that only dreams were troubling you, view this ‘reality’ as you view your dreams.”
Wishing everyone all the best of this festive season, and in the new year to come. Charles Dickens wrote, “Christmas would not be Christmas, but for the exchange of our good wishes.”
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.
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.
(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.
January is the time that people make resolutions to do things differently (better) than the year before. My theme for this past year was “Just Stop” (just click here and you can read that post), I will continue to “Just Stop” in 2018 and beyond, but for now I want to look back.
This year, I’ve decided not to make resolutions, sure there are things I want to change, things I plan on doing, things I want to do….The whole Bucket List, you know, however, there is something we often don’t do, we don’t look back and see what we have accomplished. I think we need to do that more often.
When we get sick we often look back on our “old life” and can’t see how much we’ve accomplished since we got sick. We keep thinking about how we can’t do what we used to, I see so many people with chronic illnesses doing amazing things every day, but they can’t see it. They keep looking back at what they used to be….never forget, you are still the same person. The old self and the new self is the same self. Let’s put those together and be okay with it. (yes I know that isn’t easy, even when you feel you have gotten to that point, there will still be times when you think about the “old me” longingly)
So I decided to sit back and look at 2017, and just think about what I accomplished, and I was pretty amazed at what I found.
I worked hard and lost 45 pounds. Cool.
I started exercising. Just little things, but it’s a whole lot more than it used to be and I’m getting stronger so I can do more.
I overcame some pretty severe side effects to a medication.
I worked with my doctor and found the right medication, I didn’t give up.
I survived breaking my foot while alone. I simply iced it, propped it up and waited until Stuart got home to take me to Urgent Care. I didn’t panic. yay.
I reached out to the local Hearing Loss Association of America (HLAA) chapter and I’m meeting new people through it.
I participated in the HLAA Walk4Hearing. How cool is that? okay, so I wasn’t able to actually “walk” that day, but I raised money and I went out there and showed support. and I got a t-shirt to prove it!
We had visits from 4 groups of out of town guests this year, and I handled it all well. (that doesn’t mean it wasn’t challenging, but my guests know my limitations and love me anyway, so it was easier) I haven’t had guest come to my house in a very long time!
We went out of town to see the eclipse! That was so cool; a little mini vacation centered around a most amazing event. (and I made a new friend there too)
I went to an out of town wedding for the daughter of my best friend from the first grade. I felt beautiful (that isn’t something I’ve been able to say in a long time). I had a wonderful time, and I saw people I haven’t seen in 40+ years, that’s amazing. (and now I’m in touch with another grade school friend who is just the sweetest lady, I just love her.)
I’ve had less vertigo this year. Actually, I do have vertigo often, but it doesn’t last long and I’m not completely incapacitated for hours and hours….um..days. I don’t know how much control I actually had over this, but it’s a huge deal for me. (I’m actually thinking something I’ve been doing may have helped, but I’m not sure)
I made some new online friends, and have gotten closer to some old ones.
I went to a Christmas party where I knew no one. (the HLAA Christmas party) I arrived right when the party was ending (yes I read the invitation wrong, I thought it started at 7pm but that was the end time! hahaha) I still met some awfully nice people. (I knew these people would understand if I couldn’t hear them. I exchanged many emails with the chapter leader beforehand and she made me feel most welcome and understood my fears)
I went to a family Christmas party at my cousin’s house. I haven’t been to a family holiday gathering in something like 20 years. I was very nervous, but it went well. I met some wonderful people who were so supportive of my hearing loss, they even practiced sign language with me, I didn’t feel left out, it was nice; and I look forward to nurturing that friendship.
After going to those two parties (and the wedding in October and the Eclipse in August), I realized I can do this!! I can socialize again. No, I might not hear everything, I might have to ask people to repeat themselves, to look at me when they talk, and I might have vertigo…..but it really feels good to know I can do this!! That knowledge is a huge accomplishment.
I searched out and found supplements to help with my conditions. Not a lot, but some that have made a little bit of a difference. I feel more empowered the more I learn about my conditions and the more I am able to help myself.
I have been home alone often and I didn’t die. Okay that may be a bit melodramatic, but Stuart used to have to work at home almost every day, now he goes into the office. Some days I do need him to come home to help me, but I do not need him to be physically with me all the time. awesome.
I baked during the holidays!!!! I haven’t been able to do that in YEARS! and I love doing it, so this was amazing for me!!
I enjoyed the holidays. I know that’s not much of an accomplishment, but the holidays can be hard, and have been at times very hard. This year I sang carols for over a month! I shouted “Merry Christmas” to a Santa that was waving outside of a store and it was joyous when Stuart told me that “Merry Christmas” was shouted back. (I felt like I was in a Christmas movie)
Most recently I’ve begun to “paint” using the AutoDesk Sketchbook app, and I’m creating some pretty nice pet portraits. I’m pretty happy about that.
I started Loom Knitting this year! I’ve made a number of blankets, scarves, and the coolest pair of socks ever!
one more – I only had 2 or 3 (I think) seizures this year. (if you don’t know about me and seizures you can read about it here: Psychogenic Seizures…) How cool is that? Yep, therapy works when you work hard.
Now, I challenge you to sit back, take a relaxing breath, and think back over the year and only think about things you have accomplished (or some wonderful things that happened). There were a lot of things that went wrong this year (like the awful medication side effects, and watching our country fall apart….) but it really doesn’t do me any good to think about that stuff. Look at all the things I did!! That is worth a reflective look at 2017.
(about the photo above: From left to right starting with the top left: Me and Kim, me and Lisa, Walk4Hearing t-shirt Baked Christmas Goodies, silly Christmas light necklace, me in Santa hat Stuart modeling the cool socks I made, a portrait of Max, Me at the wedding)
I’m on Instagram now! (Not as Picnic with Ants, just as me) If you’d like to check it out, I’m wendy.holcombe
I love the sentiment behind Thanksgiving. Take the time to be thankful for what you have.
Then I look around. Is that really what I see? There is so much talk of spending time with family and friends and eating and …and…and Well what is a person to do who has no one, or who has very little? I have very strained family relations. I am never invited to any family function. This can be very hard. Some years it hurts more than others. This year I became very melancholy about family, I’m sure it is because I have been so sick and the steroids have been turning up my emotions a bit, but seeing all the stress on how we should be with family and how things “should be” started to make me feel even sadder about it all. (Don’t worry, all is good with me.) If that could happen to me imagine what it could do to someone who is really depressed? Someone who has no one?
I remember those times. I have spent Thanksgiving and Christmas, alone. On occasion I was invited to friend’s for dinner, sometimes they were fun, other times they were miserable. If you reach out to someone and invite them over for a holiday meal, please try to include them in your festivities, not just feed them. I have never been more miserable than when I went to a holiday meal and felt I was a charity case. Sitting in a corner alone watching people have fun is worse than sitting alone by yourself knowing people somewhere out there are having fun. I’m not saying, don’t reach out and invite someone over….please do! But include them in your festivities. Do not have family gift exchange in front of someone who is alone for the holidays. Do not do your yearly family traditional …. whatever….and not include this person. Do something that includes this person. Make them feel welcome and special. Make them feel you are Thankful they are there. If you have a special family tradition that you cannot include this person in, then invite them to come later, or have the tradition after they leave, or find a way to somehow include them. Some people may not have a hard time with this kind of thing, but I did. It was torture to see a happy family doing things that a family does knowing my family didn’t want me with them. That is not to say I was not grateful to everyone who had me over for a holiday meal, I was. I have been to some homes where I didn’t want to leave I felt so welcome and included. (little hint, if you have someone over….get them involved. Treat them the same as you would anyone else. I loved it when I was put to work, or was told to help with the kids, was taken aside by grandma and told story after story….when I was treated like family, that was the best.)
It’s also that time of year when I see so much food everywhere! I hear people talking of family and friends and togetherness and FOOD!
I’m amazed at how much food is wasted in this country, yet so many people go hungry. There is no reason for anyone in this country to go to bed hungry. There are so many things wrong with this I just don’t know where I would begin to talk about it here. Not today.
Today I want to just say, when you are planning your Thanksgiving meal, think about the people who don’t have one. When you go to the grocery store and you see that box that at the entrance where you can donate to the local food bank, please put something in there. People are using the food bank more and more these days. The place to go when you are in dire need is overwhelmed with people in need. Every time you go to the store, please put something in that box. If you can donate to the food bank, even better, then they can buy fresh food to give out. This is very important, even when the needy are getting something to eat it is often so far below nutritional standards they are so malnourished they are getting sick and often still starving. Most of the hungry are children and elderly. 1 in 5 people in the United States are hungry. When you are wearing your elastic pants this Thanksgiving so you can eat too much, remember there are people who don’t have enough….some who don’t have any. Remember, they won’t have enough the next day either, so continue to give. Project Sunlight is a great place to get ideas on more ways you can help. At Feeding America you can find more about hunger in America and you can find your local food bank and see what they are doing in your area.
Remember, after Thanksgiving people will still need food. We often give more to make sure people have this wonderful meal on this day, but then they go hungry again a few days later. This year won’t you say thank you for your bounty by sharing a little throughout the year.
Now…for a few things I’m very thankful for this year….
I cannot say how thankful I am for my husband, without whom I do not know how I would manage to navigate this world.
After 15 months without a job, my husband found work. Not just a job, but one he enjoys!
this moment is good. (it has been quite a ride of ups and downs this past month, the past 2 days have been better…one moment at a time…accept and make the most of it.)
I had nearly 5 months of feeling so much better than I thought was possible.
for learning more and more about living more mindful
for learning to be less judgmental of myself and others.
for having a roof over my head, heat when it is cold, food when I am hungry, water when I am thirsty…
for feeling safe.
for having at least one friend I say anything to and know it will be OK.
for a very special email I received the other night that helped more than the sender could ever possibly know.
for learning how to forgive, and knowing that forgetting isn’t as easy.
for remembering again and again….I can do this….one moment at a time.
There is so much more I can’t even think right now….actually…I can’t really think right now. Unfortunately, I’m getting a bad headache…ah the joys of weather change.
**this post was started on Wednesday evening, finished Thursday morning**
Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.
After my beautiful day, I hurt so terribly that night. Every muscle, and joint ached. I took a very hot bath with Epsom Salts, like my massage therapist tells me too. It helped, but then I got all woosey and dizzy when I got out of the tub. Change in temperatures was too much for my head. (I tried to do it gradually, but it didn’t work out.) Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.
The next day was an in the bed day. Just one big ache, and the tinnitus was yelling! So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.
Today, I awoke feeling better. I got up, went downstairs and started to make my own breakfast. Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.
Twice today I had an attack! However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack. They both came on fast, and we worked fast getting the meds in me. Stuart got everything prepared, but it calmed down. On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops. I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant. I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.” He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling. However, that passed, I felt alright. Then a bit later, I was oh so sick. I wonder if the “nervous” stomach was a clue? I’ll try to pay more attention to the next time that happens.
**added to post Thursday morning** I didn’t have to wait long. I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin. This attack was already in full-blown nastiness before I could move my head to get meds in me. It didn’t last long, thank goodness. And I will spare you all the details this time. One thing that continues to linger with me about it, is my headache. I slept a few hours, but my head hurts so much. I finally felt I could keep something down long to eat a little, just so I could take a pain pill. Right now, my head still hurts, and my stomach hurts….what a great way to start the day.
I don’t understand it. 3 attacks in less than 24 hours? It’s such a turn around from just a few months ago. Do I continue to try to get back to that with Dr. Gray? Or do I push for a different treatment? But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure? So many questions, and some how, I don’t think I’m going to get many straight answers. I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens. I think I’m going to get a lot of , “it’s up to you”, but I really need some advice. I hope they won’t let me down, and I really hope they will work together on this. What will I do if one suggest one treatment and the other suggest something else? *OK, my mind is officially off-line right now*
I planned to do a post on how to better prepare ourselves for the holidays. You know, trying to reduce the stress of the season. I came up with a fool-proof plan for me. I’m just not going to do it this year. Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.
I can’t go to parties right now. The noise makes enjoying myself impossible, and I feel very isolated. Since Stuart just lost his job, we can’t give presents like we normally do. We really need to be on a tight budget, who knows how long this will last. Hopefully, not long, but we need to be prepared. Plus, I simply don’t have the energy to do it this year. I’m also terrified of having an attack at someone’s party. Can you imagine?
I do think I will send out cards. I want to send some people personalized letters that explain why I’m AWOL this holiday season. Explain more about my illness, and stuff like that. I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship. (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)
I still really need to work on learning how to know when I’m doing too much. I don’t like having the fall out after a good day. My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..” What a great idea! I’ll be trying this one, as soon as I feel I can move.
I hope everyone has a wonderful holiday season. I’ve read a few articles that talk about how to make it easier on people with chronic illnesses. The biggest one is to know how to limit yourself. You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something. There are lot’s of hints, but I felt that was the biggest thing. Take your time, and enjoy yourself, don’t push yourself too hard. Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?
We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year. We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard. I hope. I really hope I don’t get depressed because I feel left out. I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too. (of course, without me there, will they really be able to have a good time??) hahahaha
Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others. This is something I really want to work on. She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things. I want to stop that, and feel joy that others have the opportunity to do things I can’t. (Thinking, this will merit its own post.)