My mother in law passed away night before last. When you hear about people dying right now, you think about The Virus, but there is a lot of death going on from other causes, sounds a little odd, but life goes on. Babies are being born, and people are dying, and we aren’t able to congregate during these times like we normally are, and that sucks.
Margaret has been living in a long term care facility because of advance Alzheimer’s for over 2 years. When they locked it down last month and no longer allowed my father in law in she started to get worse. We’ll never know how much longer she would have lasted, but we are thinking she didn’t fare well without him. Right until the end she always knew who he was. They warned him that he would be one of the first people she forgot because they had only been married about 7 years when this started, but he spent every day with her, and she never forgot. She didn’t always know his name, and she didn’t always know he was her husband, but she knew he was her love. She lit up when he came in the room, she reached for his kisses when he had to leave. I’m so very glad they found each other, I only wish they had more time together. I’ve not seen two people more in love.
They allowed him in 3 days before she passed, so he was with her at the end. I’ll be forever grateful for that. He was the only family member who got to say goodbye. She has 3 children and grandchildren, they live across the country and could not travel during this time of isolation, but it would not have mattered, they wouldn’t have been allowed in.
There will be no real service at this time. 10 people are allowed at her internment, my father in law, her caregiver, and a couple of her life long friends, all are high risk, so even this will be will be strained. When the isolation is over there will be a memorial service, but that is so different. Right now we can’t come together to grieve. We can’t hold one another. It’s like it’s not real. Nothing has changed. The only lives that have changed are Dad’s, and her caregiver’s. The most I’ve cried is while I’ve been writing this. There has been a major death in my family and it’s like nothing happened. I can’t even hug Dad, he has self isolated, and I don’t blame him, he is high risk, but I really need that hug too. I don’t know how to help. He doesn’t show much of that kind of emotion, so I don’t know how he’s doing really. He says he’s fine. I worry. She was his life. But that’s why we moved here, only how do we help when we can’t spend time with him?
Oh how I wish I could have known Margaret better, but the little I knew her, I adored her. She was an amazing woman! She was a trailblazer! She worked with computers long before it was something women did (some amazing stories there), she did amazing volunteer work, loved to hike, traveled the world, collected beautiful art, had an unwavering faith, raised 3 successful children, and was the kindest woman you could meet. and that’s just what I know about her!
I guess I’ll start first by apologizing for having to have Lorraine do Mindfulness Monday for me again this week (thank you Lorraine, you awesome) I have been feeling like a fraud. I have been talking about mindfulness for a few years now and I simply haven’t been able to live the life. My life seems out of control right now and I haven’t been able to accept that this is the way it will be and be okay with it. My meditation practice has never been as regular as I’d like, but lately it has been non existent. Why is it when I need this the most, I have been unable to simply let that shit go.
Living in close proximity to family has been more stressful than I thought it would be. We haven’t been able to help my father-in-law as much as we thought we would. He simply wants to keep doing as much as he can in addition to caring for his wife, so he has some semblance of normalcy. We do try to see him at least once a week, but that doesn’t seem like enough to me, and we haven’t been seeing as much of M as I thought we would. She has no idea who we are and I’m afraid that is making her a little frustrated. I’m not sure about that though. She is very pleasant to be with, she talks and talks, I just wish I could hear her better. Now that I’ve been more symptomatic, it’s hard to do much to help anyway.
My hearing loss has been much more of a challenge here than I thought it would be. Not only do I have trouble hearing M, I can barely understand anything my niece and nephew say, and my new psychiatrist…well, let’s just say, I won’t be going there without Stuart with me to help translate. She is very soft spoken and has an accent so she enunciates her words differently, it makes it extremely hard to read her lips. I wish I knew sign language so I could request an interpreter. I could request CART, but that’s really hard to set up, so it could make it very hard for me to get an appointment when needed. I also don’t understand my headache doctor, he also has an accent, he talks fast, and really has no idea how to talk with someone who has profound hearing loss. That kind of amazes me. This city has a large elderly population, that means there are more people here who have late onset hearing loss, doctors should know how to communicate with us. Oh who am I kidding, many doctors don’t know how to communicate with anyone, hearing or not.
The vertigo has gotten worse. Ironic thing, I just received a letter saying my Medicare benefits are being reviewed, right after that my vertigo started going crazy! When I finally got Medicare my symptoms started getting better, not immediately, gradually, but it was better. Was it the extreme stress of feeling like a burden, and the fear that if something happened to Stuart I wouldn’t have insurance or any income, causing my vertigo to be worse? I have no idea, all I know is that I’m having vertigo again, often, and I’m really upset about it. I’m even using my walker again, not every day, but I’m definitely getting use out of it again. I think buying a car was tempting fate, the last time I got a car I got worse….you can see how my mind is just spiraling. I’m so tired.
To top it all off, I’ve been dealing with some of the worst rage episodes I’ve had in a long time. I started taking estrogen about 2 weeks ago for menopausal symptoms, I’m thinking that could be it, but since I have Bipolar Disorder it always concerns me. I do have a call into the doctor, let’s hope we can figure this out before I kill someone.
Speaking of my mental health, my psychiatrist had gene testing done to help determine which drugs are best for me. The results are very interesting. I want to share a lot of that with you, but this post is getting long, so I’ll save that for another day. If you’d like to read more about the test I had, it’s called Genesight, here’s the link to their site. https://genesight.com/
My back has started seizing again, the muscle spasms stop me from doing a lot of the things I’d like to. Like baking!
But I was able to do a little celebrating for Halloween (after a complete meltdown on Halloween day, the night turned out pretty good.)
Here’s a few photos of my makeup, one from a festival we went to on Friday and the other for Halloween night to give out treats. Halloween night wasn’t very inventive, it was the end of a very long and emotional day, so my makeup was not what I had planned.
Friday night at the Pima County Air and Space Museum
Halloween night at home
I hope your Halloween was a hauntingly good time.
I’ve been having a hard time writing lately, I may be writing more journal type post, I think I need to get more of this stuff out.
I’ve been having a heck of a time with fatigue and migraines, so this little gem was met with much joy! I’ve used it a few times already today, I can’t say for sure how much it has helped yet because I used it in conjunction with other medications, but I can say that my migraine did get better! Yay!! There’s a lot of drawbacks about this little thing, like how long it took to get it here, it isn’t rechargeable so you have to get a new one every month, (that’s a lot of garbage!) and it stops working in a month even if you haven’t used it hardly at all. They really have a racket going on here….but if it works, how I can not use it? I’ll do an update on it soon!!
There are a few more things I’m thankful for this week:
the kindness of friends (and some strangers).
not having to go to work every day, because I wouldn’t have been able to lately. (never thought I’d be thankful I’m disabled…I’m just differently abled)
we’re looking for a house, this is not a fun experience, but I’m so grateful we are able to buy our own home and hopefully soon we will find the perfect place for our family.
we were able to babysit last week and we didn’t die, nor kill anyone. hahaha
my niece is reading a book and telling me all about it. (she literally just texted me before she went to bed. She’s 10)
I didn’t throw up in public. Okay that sounds strange but we were out on Sunday and I took a swallow of water while we were walking and suddenly I got choked. I coughed and gagged and water spewed out of my mouth and nose, I was so embarrassed, but I didn’t throw up, that was a victory!!
we have A/C. We live in Tucson, AZ; if I didn’t have A/C I would die. That’s not an exaggeration.
I’m not homeless. There is a huge homeless population here, it really makes me realize how very lucky I am. (and it annoys the heck out of me that so many people here assume that all homeless are addicts! Really? Wake up people! It can happen to anyone!)
I was able to get a topical ointment for pain from the medical marijuana dispensary today. It is all CBD, so anyone could buy it, but I like getting it from the dispensary because they independently test everything so I know it has what is says it does in it, and the girl that I talked with there today was so knowledgeable! I’m learning so much. I’m hoping the ointment will help me sleep tonight, my wrist/thumb have been keeping me up at night. (Don’t worry dear friends, it’s healing nicely, it just takes time). I also got some gummies to help me sleep, they do have THC in them so unless you are in a legal state you couldn’t get them. I’m very grateful I live in a legal state.
That’s all for now. I have been writing a post on my experiencesgetting my medicinal card and my first trip to the dispensary. I’m sorry it is taking me so long, recovery has been easier than I expected, but it has made me very tired; it is a struggle to get things done and sometimes the pain won’t allow me to type long.
Thank you all for hanging in there with me. I’m very thankful for you.
What are you thankful for this week? I’d love to hear about it.
Family members can be your best friends, you know.
And best friends, whether or not they are related to you,
Can be your family.”
~Trenton Lee Stewart
*photo taken at Wendy and Stuart’s wedding (I’m the one in yellow)
Thank you to all who are members of my Ohana. I love you. ( Part of Hawaiian culture, ʻohana means family (in an extended sense of the term, including blood-related, adoptive or intentional). The concept emphasizes that families are bound together and members must cooperate and remember one another.’)
“Ohana means family. Family means no one gets left behind or forgotten.” ~Lilo and Stitch
I sat down to write this and all I can think is, “I’m tired”. Hell, I’d say I’m pretty exhausted, and I still have so much to do. Just praying I can accomplish much more before I completely collapse.
On the 23rd the movers came and packed up our house to move us from North Carolina to Arizona. We started our trek across the country the next day. We had planned to take it slow, drive about 4-5 hours a day, as long as we got there sometime this week we thought that would be fine. After the second day we got word that our stuff would be arriving in Tucson on Tuesday (the 29th), if we drove 8 hours a day for the next couple of days we would be there in time. It wasn’t a huge deal if we weren’t there when everything arrived, we had people who could take care of it for us, but I could tell that the thought of us not being there when they unloaded was stressing Stuart a little, so we decided to make it happen. We arrived the afternoon of the 28th, and our stuff arrived at 8:30am the next day.
The trip here was pretty uneventful, just a few little things bare mentioning. For most of the trip I had a stomach ache. Gastritis was hitting me hard. I could only handle bland food. That’s a little challenging when you are driving across the country with a little dog and have an allergy to wheat. I ate a lot of oatmeal and baked potatoes. One night I did venture out and had steamed chicken and broccoli with rice…no sauce, and I did okay with it. I’m happy to say that my stomach calmed down now after we got here, I even had a piece of pizza. The pain in my stomach was so bad the first day that I seriously considered going to the ER, but I just had an endoscopy done and it only showed gastritis, so I was pretty sure it was just flaring. (Gastritis is a general term for a group of conditions with one thing in common: inflammation of the lining of the stomach.) I have been wondering why my stomach hurt so much on this trip and the only thing that I can think of that was different was that I stopped taking turmeric last week. (I know you are all thinking, stress, but I have been under a lot of stress the past month and I haven’t had a stomach ache) I’d been taking tumeric for months (maybe a year) for inflammation, but I wasn’t sure it was doing much. Now I’m beginning to think it was reducing the inflammation in my stomach. I started taking it again last weekend, and I haven’t had issues since.
I must admit the pain caused me to be one irritable cranky bi…umm…witch. Things that normally wouldn’t phase me in the slightest were suddenly getting on my nerves something awful. Yes, the stress of moving did not help. I was feeling a bit emotional about leaving the Southeast. It just seems a bit final. I simply don’t know if I’ll see some of those people ever again, I’m not dwelling on it, but it makes me sad. And not knowing what to expect with Stuart’s stepmom was also probably contributing to the stress. I really hate that word. I hate that just normal day things that we have to deal with can cause so many physical symptoms. Stress is not always a bad thing, but it can do havoc on your body. And I hate it when a doctor tells me that “it’s stress”, argh!
So the trip was good except for my tummy ache and being a grump.
On the 29th the movers delivered our stuff and I saw the house for the first time.
When I walked up to the house a hummingbird came right up to me, I took it as a sign that this is a good place. (both my and Stuart’s mom loved hummingbirds, I have a couple of meaningful hummingbird encounters, I may share those on another day) The house has a good feeling about it. The house is old and small, but it’s well taken care of, and it has an amazing yard. Not the kind of yard you have in the Southeast, but a cool Southwest yard. It also has a pool. I’m so excited about that! Oh, I’ll post pictures soon, I’ll show you everything!
After the movers left we went and had lunch with Stuart’s dad and Margaret. It was the first time I’ve seen her since the accident. I wasn’t sure what to expect so I prepared myself for the worst. She is still a dear sweet woman whom I adore; but she had no recollection of meeting me before, or knowing anything about me. I didn’t expect her to, so I wasn’t disappointed. I was pleased that she remembered Stuart was here last month, that was nice. She may not remember that tomorrow, but she remembered it today. We had a pleasant lunch, then it was time for us to leave and she became agitated. She is convinced they are trying to poison her. You see, she doesn’t like to take her medication, so they put it in applesauce to give it to her, but she tasted it. It was that taste that made her start believing they were trying to poison her. I’m told she calms down fast and she won’t remember that, but it affected me. She was very happy for the rest of the visit, she talked and talked. She made the comment that she likes everything. When I simply smiled when she said, “No really, I just like everything. Well, I don’t like someone right up in my face waving their hand, but mostly I like everything.” (this was before the poisoning episode)
She is so in love with John (Dad). When he walks in she lights up, and runs over to him and hugs him and kisses him. It’s so wonderful. They are still so much in love. He is a very good husband. Tonight Stuart was telling me that they don’t know if she’ll continue to remember him. She has lost most of her short term memory and it keeps encroaching on every day. She will start forgetting those she has not for the least amount of time; Dad and she have only been married for 7 years so she could start forgetting him in the not too distant future. The longer she has known someone the longer she will remember them, she may not remember their correct age; for example she may think her son is her husband, because if fits with she is in her memory. It makes me sad. They are so much in love. Dad once told Stuart that as much as he loved Stuart’s mom, Margaret was his soulmate; it breaks my heart that they had so little time together.
Margaret does seem to enjoy the time we spend together. She just talks and talks, about anything and nothing, but some of her stories are quite entertaining. I enjoy talking with her, my only problem with that is that I can’t hear a lot of what she says; I follow her body language and mimic it, that seems to be enough for her, but I really wish I could hear her better. I don’t know if I can be with her alone if I can’t hear it well, I may not understand that she needs assistance before she gets agitated.
I started writing this last week, but we had a time getting out internet connected, the cable company isn’t in much of a hurry to send technicians out to a house to get them turned on so I couldn’t finish it. For some reason, the WordPress app wouldn’t let me do anything on my own blog. I couldn’t even comment of a post. And the last reason I haven’t been able to post is that I haven’t been able to type very easily.
Right before we left my right wrist started hurting and my thumb was partially numb. Just exactly like how the De Quervain’s tendinosis in my left wrist. That is pretty strange; it’s not acutually that strange for people who have had it, but it’s alson normally found in women who have babies. The act of repeatedly picking up a child can cause it, but me? Why am I getting this? I have no idea what I’m doing, I thought I’d figured out what cause it in my left wrist, but now I’m not too sure. Well, I got a shot in it on Wednesday, crossing fingers it works and I don’t have to have further treatment. So that’s the reason’s I haven’t been posting about this adventure. Well those and being incredibly busy.
I’ll write more about where we are living now soon.,,,With more pictures.
My husband’s stepmother (M) was on her way to a basketball game when she tripped and fell face first on cement. In that instant, our lives changed forever, we just didn’t know it yet.
After the accident the only real damage evident was the loss of all her front teeth. She was recovering and was going to be fitted with a bridge, but during her follow-up with her physician to discuss other symptoms she was having, they found that she had dangerously low sodium. Low sodium can cause swelling, for the most part that’s not dangerous, but “when the cells of the brain swell, it’s much more detrimental. Because the brain cells are so tightly confined by the skull bones, even a small amount of swelling can be dangerous. This is particularly dangerous when sodium levels drop rapidly, causing brain cells to swell rapidly, Without immediate medical treatment, this rapid swelling could lead to coma and death.” (1) M was quickly admitted to the hospital, however, she was nearly comatose before they could lower her sodium levels.
The severe drop in sodium caused havoc with her body, we knew she would require physical rehabilitation. However, when her sodium levels returned to normal, it was obvious there was something still wrong.
M was having severe issues with her memory. She could read, but she couldn’t comprehend what she was reading. There was further testing, and it was found that she had a tiny subdural hematoma. (later is was determined that the hematoma was worse than initially thought) There was also talk of Alzheimer’s, as this runs in her family. (from what I understand she was having minor memory issues before the accident)
Soon it became apparent that M would need long term care. She is not expected to make a full recovery. She will be entering a long term care facility in less then 6 weeks, and her children plan to sell her house in 6 months. I’m not sure if they are selling it because the may need funds, because she is not expected to ever come home, or because it would not be a safe place if she ever did come home because as it is a split level and she has to be very careful not to fall, or a combination of the 3. She also has osteoporosis and they’ve warned if she breaks a hip or something, they can’t do anything for it and most people often die from it. (no, her children are not kicking dad out, this was decided by all involved)
M is one of the most logical people I know. She was a computer programmer for years. That’s pretty amazing since she is in her late 70’s and computers have come a long way in the last few decades. She took out a long-term care policy years ago, knowing that Alzheimer’s runs in her family; she wanted to make sure things were taken care of if she also got it later, I wish Stuart had been able to get a policy like that, the insurance will cover all of the cost of the facility, and it’s expensive. I never dreamed that a good assisted living facility would cost $6000 a month. From what I understand, this place is just wonderful. They even have dog and horse therapy.
Stuart’s father (Dad) and M got married about 7 years ago, about 7 years after Stuart’s mother passed away. (I’m really not sure about the exact time in there) He moved in with her and they have been living in her house. This is a major life change not only for M, but also for “dad”. “Dad” does own 3 houses of his own, but someone is living in 1 with the option to buy, 1 is too far out of town for him to travel to the facility M will be in, and the last one needs some repair. He plans to sell the last one within the next year. So “dad” has to find a new place to live.
We’ve been discussing quite a bit recently, before the accident, about where we’d like to make our forever home, where we’d like to eventually retire. (well, when Stuart retires, I haven’t been able to work in years) After hearing this news about M, we’ve decided to actively pursue moving to Tucson, AZ. We have family and friends there, it’s warm there year round, and housing is less expensive. We’ve discussed this briefly with dad and it sounds as if he would really like us closer. We plan look for a house that has some kind of room for a guest to live-in; a guest house or little apartment would be ideal; that way dad can live with use without feeling like he is intruding on our marriage. I’ve looked up doctors and I’m please with the possibilites. I even found a group that supports adults with hearing loss. Now, Stuart just has to find a job.
This is a major life change for everyone in our family.
I recently wrote a post that could easily have taken up 3 posts worth of writing. You know if I wrote that much in one sitting I have a lot on my mind. You also know if I’m making up words to say how I feel, I’m in a one heck of a state!
Some of the things I have written you will still see, I’m breaking it up into a couple of post, some of it you won’t….I have decided I just can’t talk about it here. Maybe some day, but not now. I want to, I think it will help some people, but it’s just something that I can’t talk about yet, at least not here. And that’s hard on me, for a number of reasons.
So…on to what I will talk about… (and it turns out this post is MUCH longer than anticipated….yep it’s one of those days. as you get to the end you will understand, but forgive any errors please, I couldn’t go through and edit this, I am in too much pain. But I wanted to get it posted. at least part of it needs a voice…..)
Saturday my father and sister came for a little visit. It was nice. Even though we only live one state away we don’t get to see each other much. They don’t get to come often, and I can’t travel very often. Unfortunately, since our trip to Tucson, 2 years ago, I haven’t been able to travel at all. I thought it was going to be better the last few months, but then I hurt my hip. Now I can’t ride in the car across town without being in severe pain. So who knows when I can go to South Carolina. Thankfully, my sister brought my dad to see me. We had a nice lunch and visit, then they were on their way. Before they came I decided to get a shot of Toradol, an anti-inflamatory to help me not be in intense pain while they were here. I wish I could have them more often, but you can’t take them on a regular basis. I was very pleased that I could visit with them without worrying too much about the pain. I was also happy I could hear them fairly well. I couldn’t hear my father at first, but after a little while I realized if I sat closer to him I could hear him better. What a relief. I felt bad that I could understand everyone else, but was having such difficulty understanding him. All in all, a good visit.
After they left I decided my hip was still feeling well enough we could go and meet the dear lady from the agency who had Kiki and make her adoption final. So off the Pet Supermarket we went. Luckily, they are very nice there and let me have a chair to sit in while we shopped a bit and adopted our newest family member. Since the vet thinks Kiki is between 1 1/2 and 2 1/2 we decided that her adoption date is her 2nd birthday! So September 27th is her birthday! She was lavished with gifts. She got a new sweater, because she has been cold on some of these early fall mornings when she goes out. It is red, and looks quite fetching on her sleek black and white body. She also got a new toy that she loves! She has abandoned all of her other toys for this toy, it is so funny! She also got a new tag, a little purple heart with her name and phone number on it….we need to get her microchip reprogrammed. She is officially ours now! I was so very happy when we were in the store and one of the people who work there told me that he had seen Kiki so often when she was there waiting to be adopted and she looks like a different dog. She is so happy and well mannered. He said it is amazing how much she has changed in just the short time we have had her. That couldn’t have made me happier. I knew then, that yes, Kiki really was meant to be our little girl.
Saturday night I was getting ready for bed. I was sitting on the side of the bed taking my night meds and suddenly I felt the Meniere’s signals. Okay, this has not been unusual lately. I’ve been very acute for the past month or more. Having mini attacks many times a day, so I wasn’t worried. I took a deep breath and calmly tried to focus. Then FLUSH..heat through my body. Ugh. OK. Calm. Focus. You got this. Whoosh. better lie down. Focus. feel the hand on the table it is steady. you are not moving. HEAT. HOT. I’M ON FIRE. Stuart walks in. “Attack?” “yep. ice.” Focus. breathe deep. calm. calm. Spinning faster. wow. deep breath. focus calm. you got this. it’s ok. spin. stop. spin. stop. breath…..Ice..Good! Still hot. chest hurts. can’t breath deep. calm. spinning fast still. calm. calm. it’s ok. it’s part of you. you can do it. “Stuart…shot please” focus calm. calm. so tired. (took meds earlier. Stuart got shot ready,(I’m lucky I have Phenergan shots available to me, it is an anti-nausea/vomiting drug) he was about to give it to me and dropped it. Couldn’t find it. suddenly spinning stopped. yes. OK. rest.
BAM. started going the other way! What the? OK…calm down. but this is weird. you can do it. focus. feel your hand. – what the heck is happening? this is not right. – it’s all OK. focus. calm calm. focus. it’s just different. – no, this is very different. now it’s jumping all around. what is going on? – calm down. calm down. calm calm. focus. it’s kind of freaking me out he can’t find that shot – focus on your focal point. it will be alright. – I need the damn shot! I’m getting scared. – shhhh. calm down. focus. focus. breathe. calm..calm. this is not real. the room is not moving. You are not moving. calm breathe. – Ah…shot. It will be better soon. – Calm…calm…shhh. AH! oh my gosh….”Stuart”. “I’m right here babe. I’m not leaving you.” “I can’t stay awake. I’m all dopey. If I fall asleep it gets worse! I’m so sick. I’m scared. It hurts. My stomach hurts.” “I’m right here, you are safe. I’ll try and keep you awake if you want”
This went on for a long while. I kept dozing off no matter what. It was horrible. I would wake up spinning even more! Then I got VERY sick. I was going to throw up. But nothing came up. I just gagged, and coughed, and mucus from my lungs came up. I couldn’t take a breath in! I had this huge gag that felt like vomit was coming up but it was like a HUGE burp came up then I couldn’t breathe. My lungs hurt. I was having an asthma attack and trying to throw up at the same time! I was so afraid I was going to have to go to the ER because I could not breathe. Stuart was holding me putting my inhaler in my mouth for me. I got enough in to breathe again. (afterward he told he kept watching to make sure I was getting in some air and not having any signs of needing oxygen….but he is also thinking we may need to see about getting oxygen for me at home.)
Finally, it calmed down enough that when I dozed I stayed asleep. And I slept! The pain from my hip did not wake me up at all that night. I was so exhausted.
The next day, was hangover hell.
I felt so bad. I was trying so hard not to feel like I handled thing badly. I really freaked out. I panicked bad. I couldn’t stay mindful. I couldn’t accept what was happening to me. I hated my body, I hated my life, I was afraid I was dying and hoping I’d just hurry up and die at the same time.
This is not what I have been working so hard on. This is not mindfulness. But it is. Mindfulness is a practice. You can’t beat yourself up if you don’t live up to your expectations all the time.
Mindfulness is not just about making it better. It is about feeling how you are, how things are now, and not being judgmental about it. It is about being gentle with yourself. On Saturday night, I could not accept my condition. I could not handle my situation without panicking. That was the way it was. I could feel every nerve in my body screaming that it wanted this to end. I couldn’t accept that this was just the was it was…I fought it. But I was there with it. I had a hard time looking back at it non-judgmentally. But now I can. I can look back and say, I had a damn hard night. I handled it the best I could. Things happened that have never happened before, and it really scared me. Who knows, I may have handled it better than I would have in the past, because of my mindfulness practice? I’m okay with how I handled it. At first I was sad about it. I felt like I failed myself. I didn’t. Mindfulness is hard. Living mindfully is not easy. But it does making living your life easier. Or at least it has mine.
So I’m off to being more accepting of how my life is, even when it’s that bad. It’s my life. It’s much easier on me when I accept that. If I try to fight it, it makes it worse. It really is better when I accept that I have my illnesses, and I have the symptoms, and all the things that they cause. I have found that I can deal with those symptoms better when I stop fighting them so hard. I feel better. I cope better. Heck, the symptoms have been easier.
I’m just saying how I feel about all of this, I’m feel I’m just testifying..haha. I’ll write a more coherent post about this sometime. With references. Or maybe I’ll find a guest writer. Who knows. For now, we’ll just see how it goes with me….hope that’s alright with all of you.
On Sunday, I decided I couldn’t stand the pain and the constant Meniere’s attacks any longer. They use steroids to break both cycles. However, too high of a dose of steroids can really mess you up with Meniere’s and make you have worse attacks. So I started on the dose that the urgent care doctor gave me and put a call in to my otologist at Duke on Monday. Unfortunately, it was phone tag for a few days, and then he wasn’t comfortable messing with this prescription. I do not think he understood the situation!! I am so beside myself right now! I mean right now, I just found out about this. I am looking at these pills trying my best to figure out the best way to ramp down off of them without it being too drastic. Going from 4 on one day to 2 on the next is not a good idea. So I take out the prescription bottle and count how many I have left. 10. Wait, I should have more than that to meet the original prescription. I count again. 10. STRESS! I filled this prescription weeks ago. Will the pharmacy really believe they shorted me?
Thankfully, yes they did. I got 6 more pills. I can do this. Breathe. Take the day as it comes, and accept it. That’s all I can do. So….I sit down and think. I will figure out how to ramp down the steroids that is between the prescription the urgent care doctor gave me and the prescription my ear doctor gave me before. I’m sure I’ll be fine. It’s not quite such a severe drop between going down. Should I be messing with my prescription? Heck I don’t know! But I feel better, with this regimen. I’m too afraid to ramp down so fast.
For those of you who have been reading for a while….remember the Walmart incident? That happened because a doctor put me on a high dose of steroids that ramped down too fast.
Now you once again have a VERY LONG POST.
and I’m too tired to read over it to fix any errors. I’m being a very bad blogger. I hope you will forgive me. I just fell again today….I’m not going to write about that now! I’ll tell all about my back/hip/leg pain after my doctor’s visit on the 6th! I’m sorry, but I’m not up to being an editor today. 🙂 My back/hip/leg thing…just isn’t going to get better if I keep falling is it? Of course, that’s why I’m falling!! I can handle it…..one moment at a time. I can handle anything for a moment, after all, isn’t that really all we know we have, this moment?
***rest in peace to my cousin Curtis Winslow. My childhood memories are full of you. 1958 – October 1, 2014
For over a year I have been clinically depressed. I have had some small doses of mania in there, but mostly I have been shrouded in a black cloth with no hope of seeing the light.
I realize now that my psychiatrist was going through some issues of his own, and didn’t pick up on the fact that my depression was more than what I should have felt. At one point he told me that he felt like he had done all he could for me and I should see someone else, I could not hear that he was looking out for me, I only heard that I was losing something else in my life. He had been my doctor for close to 12 years, I felt I was just being tossed away. So, I ended up staying with him. It eased my mind, but didn’t make me better. Yes, I had many things happen that gave me a reason to be depressed, but not as depressed as I was. I wasn’t acting like me. I really don’t remember much about 2012, I remember some horrible highlights, but not the good moments. We all know, that is not me. I normally cherish every moment I can, and look at things realistically, not escalate them to the point that I can’t see past the hurt.
The mania manifested itself as anger. I was so angry at times, and I had no control over it. I hate that Stuart was the one who had to be on the receiving end of all this emotional turmoil.
In 2012 and part of 2013 I cried every day. Yes, part of it was losing Sandy, but it started before that. I think the catalyst that started all of this was my diagnosis of Idiopathic Intracranial Hypertension (IIH). I finally knew I would never get back to the point I was at the year before. I would never feel “normal”. There were a lot of emotions that went with this, a lot of realized loses. I never expected to become a completely “healthy” person. I’ve never been one, why would that change now? But something snapped, and I no longer felt as positive as I had. My new psychiatrist thinks my medication had not been working as well as it should even before then, but I was handling what was coming my way. The diagnosis just pushed me past the point of helping myself.
I won’t go into everything that happened to me last year. I will say there were some major things that I simply could not deal with. However, I didn’t realize it then, I thought I was doing rather well on most accounts. I knew there was one thing that was eating me up and sent me spiraling out of control…. I posted a poem about family. How I wasn’t very close to my biological family and I was so happy I had a family with Stuart. I was not saying it was anyone’s fault that my family and I don’t see eye to eye, it was really more about my love for my chosen family. Well, a member of my family saw it and sent me a comment out of the blue. This is someone I used to be VERY close to, but now she hates me and slanders my name to anyone who will listen. I have not heard from her for about 10 years, yet she says my friends here don’t know me. She says I’m evil….ect. I never expected to hear from her again, but there it was, a comment from my niece. She is 3o years old and still holds a grudge over something. I don’t know what, and no one will tell me. I have a feeling it is something from my very unstable Bipolar days, but I don’t remember most of that. I was literally a different person while that disease had hold of me.
Now I have a new psychiatrist, and after one visit I felt like a weight had been lifted off of me. I felt validated. She understood my illnesses without me having to explain them. She saw I have IIH and immediately said, “You can’t even exercise.” THANK YOU! Other doctors have said, “if you could exercise”…..blah, blah,blah. It makes it sound like I choose not to exercise. Not that I really can’t. I will have excruciating pain, and will pass out. I have figured out ways to do some weight-bearing exercises. But I have to go slow. I cannot do cardio, if my heart rate gets to high, I’m out. She increased one of my medications. And I am feeling better, but I think it needs to go up a little bit more.
However, I am seeing the light at the end of the tunnel. Right now it’s just a little candle, but it’s leading me out of the dark.
I have good thoughts again. I am not crying every day. My anger is much more under control. (I know my husband is very happy about all of this.) In short, I’m feeling more like me.
I appreciate what I have. Even when I’m stuck in a dark, silent room because of my migraines I am grateful I can get out of the light, and have a roof over my head. When the world is spinning and I feel like my stomach is going to come out of my mouth, I am grateful I have a safe place where I can ride out the storm. I may not be able to walk unaided most of the time, so I’m very grateful for my spiffy red walker, that is also a seat.
I’m grateful for my dear friends who read my rantings and support me so much.
This past Tuesday was my birthday. I received more birthday cards than I think I ever have since I’ve become an adult. Some made me cry (in a good way), some made me smile and feel all warm inside. One I don’t believe the sender was thinking, or perhaps they don’t realize my hearing limitations, it played music. I can’t understand music. Stuart had to tell me it played Happy Birthday. *funny* He thought it was rude, I really think it was just a matter of not understanding. Or wishful thinking.
The anniversary of my mother’s death was June 23rd. I simply cannot believe it’s been 20 years since my mother passed away. Cancer is not prejudice it will attack anyone at any time.
Having such a hard time with Asthma lately has brought back some dark memories of watching my mother fight to breathe…… Lung Cancer is an ugly way to die. If anyone who is reading this is a smoker, I beg you to stop. If you don’t want to do it for yourself, please think of those who love you.
OK…enough of this…it’s not how I want to remember my mother.
My mother was a marvel. She hated to cook, yet she could make a feast out of next to nothing. Growing up I didn’t realize we had less than others, I actually thought we were well off, but as I look back I realize just how much that was because of my mom. She was the ultimate in reusing things, and she’d never heard of “Reduce, Reuse, Recycle”. She even had a compost pile, before anyone knew what to call it. She was raised that way, and now I live that way.
She was one of the only people in my life….before my husband….who accepted me just the way I am. She believed in me. I believe she is the only one who believed I would graduate from college. I did it! With honors! She was not surprised….I think she was the only one.
I went to a college that was just a little over an hour from home. One morning before my classes I talked to my mother and told her how much I missed her banana pudding, when I got out of class and came back to the dorms my mother was waiting, with a huge dish of banana pudding. She was always surprising me.
She grew up on a tobacco farm (so. of course. she became a smoker), she didn’t experience much while growing up, even when she was a young adult she really didn’t know much about the world. I don’t mean she was naive, she simply had the heart of a little girl, but the inner strength of Super Woman. We would go places and she would be so awed by the sites. I shared my love for art with her, and she soaked it in.
Amazingly, my mother never graduated high-school, dropping out in the 6th grade to care for her ailing grand mother, who was raising her. She also didn’t know ho
w to drive until after I was born, and didn’t have a pair of blue jeans until she was in her 50’s.
I remember going to the library with her. She was so intimidated at first, but soon she was deep in the words, looking up things she had been interested in, but never had the nerve to research them. I remember when she got a Camaro, this woman who didn’t drive until her late 30’s loved speed….but she was very careful. Until she backed into a mail truck, but that’s a different story.
She may have gotten her first pair of blue jeans when she was in her 50’s, but after that you couldn’t get her out of them. She loved jeans. Almost as much as she loved pizza!
I don’t think she had pizza until I was a girl. She was thrilled when the cheese would leave a string from the slice to her mouth. I once heard her say she could eat pizza hot or cold, for breakfast, lunch, or dinner. And she liked everything on it!
I mentioned how strong she was, one day on her way home she was attacked and she fought of the attacker by grabbing a rock and bashing him in the head. For days she looked in the paper to see if she had killed him. No notice, but the attacks in the area stopped. She always wondered. Her first marriage ended in tragedy. Her husband had a meeting one evening, he asked if she and their one year old daughter wanted to come, but my mom said she needed to wash diapers. Hours later she found out he hit ice on a bridge and ran off into the water. He drowned. My mother was suddenly a single mother, with no income. She moved in with her mother, went to cosmetology school, and started a life for her and her daughter. Then she met my dad…and the story goes on.
We had such a very special relationship. I do miss her ever moment. I’m so honored to have been raised by such an amazing woman!
Yesterday Stuart and I were talking and I told him I was grateful for many things this year. He looked at me a but stunned. Yes, it’s been a rough year.
I was diagnosed with Idiopathic Intercranial Hypertension, this knocked me off my feet for a while, and I got a bit depressed over it…but I’m so very grateful that the medication works!
I’m still having severe vertigo attacks….but I’ve only had 3 or 4 this year…That’s amazing, and something to be grateful for!
I have migraines, and migraine associated vertigo – I’m grateful I have a super doctor now who specializes in headaches. I’m also grateful that the vertigo I have with migraines, is not as severe as the Meniere’s vertigo.
I lost my dearest companion of 19 years….I still miss my Sandy so much every day – but I’m so grateful she did not suffer, and I’m grateful for all the wonderful memories I have of our lives together. “Everybody Loved Sandy”
I’m grateful my father pulled through a near death experience, and my sister was there to help him.
I had a very hard time after someone wrote me a note that simply shook my world, and not in a good way. I’m grateful (thanks to studying Buddhism) I can breathe in that hate, and breathe out happiness and love toward others. I’m also grateful that I do not have to send a reply. It’s a rough thing to accept, but some people will not like me, may even hate me, but as long as I still like me, I’m ok.
I lost my hearing in my left ear as of July last year (2011), and have greatly reduced hearing in my right ear. I’m very grateful for modern technology, with my cochlear implant (received July of this year) and hearing aid I can hear. I may not be able to hear as well, but with the help of technology I am not deaf all the time. I’m so very grateful for this!
(**a TMI note) I was diagnosed with vulvar vulvodynia, a painful condition of the vulvar region. I’m so grateful that my doctor gave me topical Lidocaine, now my husband and I can have relations with much less pain. (thank goodness there are times my head stops spinning long enough to try this.) : )
I’m grateful we were able to come to Tucson for the winter. The trip out was not as hard as I expected….Thank Goodness. The time we’ve been here so far has been rough, but I have faith I will feel better and better. I’m so grateful for the beautiful weather we’ve had so far.
With every challenge I’ve been through this year….and I haven’t mentioned them all….I’m so grateful my husband has been right beside me, holding my hand, being the best advocate for me (he has to make many calls for me since I can’t hear on the phone, he’s a wonder at making doctors understand), he loves me, and thinks I’m so very special. I tear up just thinking about how very lucky I am to have married this wonderful man. (I am most grateful for my husband and our relationship.)
And last but not least, I’m grateful for my friends. Especially the special people I’ve met through this blog and others. It makes me sad that others have to go through chronic illnesses with pain and suffering, but I’m grateful we can share our experiences with each other and know we are not alone.
There are many other things I could list that I’m grateful for but this post would be very long indeed. This post has made my lightened my heart and helped with things I was coming more and more depressed about, I believe I should take the time to notice the things I’m grateful for much more often.
If you are in the US, may you have a safe and joyous Thanksgiving. (remember, take care of yourself first.) I was not able to partake in the family festivities today, a migraine and unsteadiness simply would not allow it. (especially with all the noise, I admit I was afraid, this would have been the first get together since I got my CI, it’s scary going into a situation with a lot of noise when you can’t hear like you used to.)
May we all remember to take time to think about the things for which we are grateful.