A visit to the Migraine Doctor

On January 25, 2017 By WendyIn Chronic Illness, Headaches, Migraines16 Comments

You may recall from my last visit to the migraine doc (a neurologist who specializes in headaches) that she’s tried just about everything and suggested that I look into studies. Well, she hasn’t given up.

I saw her last week and it was a long visit. I am always impressed when I go there that she never seems to be in a hurry. I never feel like she is rushed to get to the next patient. It’s amazing really, this is a doctor who is backed up over 3 months for an appointment, you know she’s busy. During our visit, I was having slow vertigo, which made it difficult for me to follow everything she was saying. I’m still asking Stuart some things, unfortunately he doesn’t seem to have much of a memory. He must have been worried about me. I did understand most of the visit, there are just little things I remember her saying that I wish I remembered. Like she said that Melatonin was good for something other than sleep, but we can’t remember what…….well I just looked it up and it can help with a bunch of things, including migraines. Who knew? I don’t know if that’s what she said, but I’ll keep taking it. It helps fall asleep anyway.

She is concerned that some of my migraines may be caused because my CSF (Cerebrospinal Fluid) is too high again. I have fluctuating CSF, it tends to run high. The migraine medications that I’m on help keep it lowered. She felt that we need to put me on a drug that will increase this effect. So I was taken off Topamax and put on Diamox. I’ve been on Diamox before, my CSF pressure did not remain stable on it either, we’ll see what happens this time.

She did look in my eyes, it was difficult because I had a bit of nystagmus going on at the time so my eyes were jumping, but she saw that it was bulging a little bit back there, a sure sign that my pressure is up.

The weird things is, if I have high CSF I should have a worse headache when I lie down. Sometimes I have a bad headache when I wake up but often I don’t. When I have a bad headache, it doesn’t get better when I lie down. hmmmm. Makes me wonder. But then there’s the eye thing, she did say it was a slight bulge. Well I’m just not convinced and I don’t want this drug to make my pressure go too low. It’s a very strong diuretic. I’m peeing a lot, but my body will get used to it I’m sure. I’m a little more light headed, but that could just be me, but it could be the drug. I feel very confused, this one has bothered me a lot, but it says it will go away shortly. If it doesn’t I won’t be on this drug long. I do not like being so forgetful. I was angry at Stuart yesterday and couldn’t remember why!! I don’t get angry at him often, you’d think I’d remember why I was mad at him. I think this drug is making me grumpy, or maybe that’s just me. I also think it’s reducing my appetite, as least that would be a good thing.

To sum up, I’m on a new drug (or back on an old drug). I’m not sure about it. I’m keeping an open mind though. I’m keeping a journal of my headaches as always, I’m adding in other side effects I’m feeling and paying close attention to all. I go back to the migraine doc in 2 months.

I can only say: Chronic migraines and New Daily Persistent Headaches suck.

Mindfulness Monday – 33

On January 23, 2017 By WendyIn Chronic Illness, Mindfulness6 Comments

“Don’t believe everything you think.
Thoughts are just that – thoughts.”

~ Allan Lokos

“Feelings, whether of compassion or irritation, should be welcomed,
recognized, and treated on an absolutely equal basis;
because both are ourselves.
The tangerine I am eating is me.
The mustard greens I am planting are me.
I plant with all my heart and mind.
I clean this teapot with the kind of attention I would have were I giving the baby Buddha or Jesus a bath.
Nothing should be treated more carefully than anything else.
In mindfulness, compassion, irritation, mustard green plant, and teapot are all sacred.”

~ Thich Nhat Hanh

Mindfulness Monday – Health

On January 16, 2017 By WendyIn Chronic Illness, Mindfulness26 Comments

“Health is a large word.
It embraces not the body only,
but the mind and spirit as well;…
and not today’s pain or pleasure alone,
but the whole being and outlook of a man.”

~ James H. West

“The secret of health for both mind and body
is not to mourn for the past,
not to worry about the future,
or not to anticipate troubles,
but to live the present moment
wisely and earnestly.”

~Siddartha Guatama Buddha

**all artwork on Picnic with Ants has been created by W. Holcombe unless otherwise noted. This piece was influence by tarren on Etsy, and was a gift to S. Holcombe.

A Rough Go Of It

On January 13, 2017 By WendyIn Chronic Illness22 Comments

I’m feeling much better now, but the last 12 days have been rough.

I had vertigo every day since the new year began until yesterday. Finally, yesterday the world began to still.

I haven’t been on line much. I’ve only been able to read during the slower spins, so no blogging, or anything else.

One thing happened during this spell that has me surprised and proud. After days of having vertigo of varying degrees I realized that I can handle it. Now this wasn’t a time when I was throwing up for hours on end, I was nauseous, but I wasn’t vomiting; I was just spinning. (It’s hard to explain) Living a life where the world is constantly moving, where you feel you are in constant motion, this is a life I never thought I could handle, but I can. Every time I have vertigo my biggest fear is that it won’t end, I’m not so afraid any more.

Don’t get me wrong, I do NOT want to live with vertigo. It is hell. I am not conveying here how traumatic it can be, the vertigo I had changed speeds a lot, I had spins so fast I couldn’t make out anything I was seeing, other times it was barely detectable except for the feeling of movement and the exaggeration of motion when I moved my head. (That really is a bad sensation ) I don’t think I could deal it with day in and day out if the world was spinning so fast I can’t make out anything, but I handled the slower spins well. I even handled the faster ones, but they rarely lasted over a couple of hours.

My point is, I’m not as scared. I’m proud of how well I handled this flare. The winter is really one big flare for me, so I’m sure I’ll be looking at the world spinning by again soon, but I’m not as afraid this time. I can handle it.

Hopefully, I’ll be feeling better for a while and I can catch up with everyone. I miss you when I’m gone.

Are you less afraid of your illness now than you used to be? If so, what changed?

Mindfulness Monday – 31 Rumi

On January 9, 2017January 8, 2017 By WendyIn Chronic Illness, Mindfulness1 Comment

“Do not worry that your life is turning upside down.
How do you know that the side you are used to
is better than the one to come?”

~Rumi

“If you only say one prayer in a day, make it
‘Thank you’.”

~Rumi

5 minutes

On January 6, 2017 By WendyIn #MyMightyMonth, Chronic Illness16 Comments

#MYMIGHTYMONTH prompt
Set a timer for 5 minutes.How are you feeling right now?
Jot down your thoughts, and try to limit yourself to just 5 minutes.

5 minutes for me to write a blog post will be a miracle, but if I don’t count editing, maybe I can get something out that will mean something.

How do I feel right now? Less dizzy than I have in a week. I’ve had vertigo so much this week, especially on Monday, I didn’t get Mindfulness Monday out this week. This is the first Monday I’ve missed in over 7 months. I’m so disappointed. I felt guilty at first, but I had no control over it, so I “just stopped” 🙂

I’ve been able to knit some when the spinning in my head would slow down, that’s been nice. I’m making a blanket now for Project Linus. They make blankets for kids who need one. It can be a baby or an older child. They could be sick in the hospital, or homeless, if they need a blanket, they get one. It’s a great project and I’m excited to get involved. I may not be able to make many blankets, but to be able to do anything, it’s wonderful. To be able to volunteer doing something is giving me more of a sense of purpose.

Well, that’s 5 minutes. and that’s okay because I really don’t have much more to say. I haven’t been feeling well, don’t worry, it’s just my normal way of not feeling well. I’m grateful I’m not sick-sick on top of it. (knock on wood) There are so many bugs going around I hope none of you are sick.

How’s your week going? It’s supposed to snow here tonight. It doesn’t snow often where I live in NC, so people aren’t used to it. It will be pretty for a few minutes then people will go crazy on the roads, and I’ll be ready for it to go away. Truthfully, I wish it never snowed. As the weather changes my head is killing me. As it gets colder, and it is, I ache more. I really don’t like cold weather.

Do you like the snow? Does it make your symptoms worse? Or do you love the snow?

Just Stop

On January 3, 2017January 3, 2017 By WendyIn Chronic Illness23 Comments

My theme for this year. Just stop.

Just Stop and listen to my body more.
Just Stop and listen to others.
Just Stop and think before doing.
Just Stop and think before speaking.
Just Stop and get centered before moving.
Just Stop and think before putting that food in my mouth.
Just Stop trying too hard.
Just Stop feeling guilty for things I can’t change.
Just Stop and meditate.

Just Stop.

A Day in my life…..

On December 31, 2016December 31, 2016 By WendyIn Chronic Illness12 Comments

During my last post I told how I planned to do some journal posts during the month of January. I planned on these being open and honest reviews of my days, then I realized I wasn’t totally honest while writing my last journal entry. I talked about the good things, the things I accomplished that day, but I glossed over the fact that I had a vertigo attack. I just slightly mentioned it, instead of saying how horrible it was. How it stopped me dead in my tracks. How I was stuck in a chair for over 2 hours not being able to focus on anything and being so upset that the day was ruined. (as you know now I decided to risk things and go out anyway, very unlike what I normally do, normally I stick very close to home after having a vertigo attack, but I was determined) During the attack I was scared. It is a very tough thing to deal with. After the attack, I’was exhausted and had to rest for a while before I could do anything else. Everything I did I pushed through. That doesn’t mean it wasn’t a good day, it did turn out to be a very good day. I simply glossed over the rough parts when I was journaling about it.

Well, day before yesterday was a good day. Yesterday I paid for it, but I couldn’t give in and just rest all day, I had my yearly physical I had to go to. I ached all over and just wanted to stay in bed all day, but I had to go to the doctor and have her poke me a bit and talk about my blood work. I hate going for my physical, often they find something else wrong, who wants to go find out something else is wrong? This time I didn’t find out anything else is wrong. Yay. My cholesterol is still high. The good cholesterol is in good shape, but the bad and total are not in good shape and my triglycerides are too high, as usual. We discussed my diet. First she told me that I’ve lost weight. SIX pounds! Woot! Yes I’m being sarcastic. She was trying to be supportive, but really, 6 pounds in a year, is not good. (She had no idea I’d been trying to lose around 40lbs the whole year.) So we discussed how I could get my weight down and my cholesterol in better shape. I have a friend who has been on the Ketogenic diet for a while, so I asked about that before she suggested anything and she said it was a good diet for what I need. She said it is good for people who have to be more sedentary. The Ketogenic diet is very low in carbs and high in fat. This is very different than I am used to eating. I don’t go crazy with carbs usually, so I don’t think that is going to be too big of an issue, however increasing the fat is going to be odd. It’s just so counterintuitive to what I’ve always done. As soon as I can wrap my head around this and all the sweets from the holidays are out of the house, I’ll start the diet. wish me luck.

Today I’m still achey. I’ve had a migraine all day. I had an appointment with my therapist this morning. That’s going well, I think. Some days I wonder why I’m spending so much money to just sit in there and talk, am I really that hard up for friends? By that I mean that on some days I feel like all we talk about is stuff you’d talk about with your girlfriend. Like, I found out who cuts her hair….now my hair finally has a good cut! But if I think about it, most everything we talk about comes around to something that could benefit me in the long run. So it’s all good.

20161230_202846

On the way home today we stopped off to buy more yarn. Yes, I’m really enjoying my Knifty Knitter, so much so I think I’m going to finish my first scarf in a week….or less. I’m thrilled that when I’m all achey and feel cruddy I can still sit and “knit”. I feel productive. I’ve always wanted to make baby blankets for charity, now I might be able to do that. I’m looking into it.

Right now everything is taking much longer than it should. But that’s normal for me. Right now I’m going on 2 hours for writing this post, and I know it will go longer. I keep wording things wrong, can’t think of words, can’t spell, or I simply get stuck. At this moment I hurt too much to think and I don’t want to try any more….it’s just too hard.

It’s very unfortunate that cannibus is illegal in most states. I’ve used it to help me in the past, but it is illegal in my state. I’ve tried cannibus infused coconut oil to help with the pain and sleep, it is amazing for that. I’ve used it via a vape pen during a vertigo attack and it stopped me from throwing up and slowed the vertigo. What I wouldn’t give for it to be legal. I’m having a hard time recently with vertigo and pain, it just makes me think about this more and more.

I think that’s all for my journal entry today. I didn’t mention that I had a vertigo attack yesterday and a small one today, but if I mentioned every one we would be talking about vertigo a lot. However, I think I should mention it every time during these journal entries to bring attention to how often I really do have vertigo.

I hope everyone has a safe and happy New Years Eve celebration!!

Tomorrow in my mother’s birthday. It’s always a bittersweet day for me. I celebrate the day of her birth, but I’m sad she is no longer with us to celebrate. It’s always an emotional way to start the year.

#MyMightyMonth – A day in my life

On December 30, 2016 By WendyIn Chronic Illness9 Comments

my-mighty-month-wide-1280x427 — Take the Might’s 30-Day Challenge, click here

I just got an email from The Mighty, they are starting challenges to promote self-care. The first 30-day challenge is to journal. I thought, what better way to keep me posting and keep my creative juices flowing? I may not post every day, this is not that kind of challenge, I do not feel pressured to post every day, it’s just a challenge to get you started journaling, but I plan on posting often during the month of January. Most of these won’t be my normal post, these are going to be journal entries. You will be able to step in my life for a month and see what Wendy is up to. You may get very, very bored, but you may find out a few things about me that you never knew. You may also find out how I deal with some of my trials, or how I don’t deal with them. You might find out just how long it takes me to do things. Some days, you might find out that I don’t do much of anything. I think all of this will be good, for me, and hopefully for you and this blog. I have a lot of new followers who don’t know a lot about me, this is a great opportunity for them to find out all about ME. 🙂

It’s not quite January yet, but I thought I’d write about my day today, it was much more eventful than my normal day.

We had planned to go to Ikea today to get hubby a desk, he is in dire need of one. I’m very tired of seeing his computer on the dining room table. Unfortunately, when he looked at his coupon he found it expired and he didn’t want to spend that much money right now. Truthfully, I’m not sure he’s completely decided that’s the desk he wants.

I have to admit this put my entire day off game. I was really looking forward to going out to Ikea and walking around that big store and getting some exercise. It’s always a bit of a scare doing something like that, but after being closed up in the house so much, it is a thrill for me to be able to do anything out of the house. Even if I might pay for it later. Needless to say, I was upset, so we decided we needed to go somewhere. We decided to go to the mall. I have a gift certificate, what better time to use it? Well today was the day that everyone decided to use their gift certificates, or take presents back, or shop after Christmas sales, or something, because there were NO parking places at the mall. I couldn’t see fighting all the people, and me with my walker, no way.

We decided to go by the library. I had a book on hold and thought we’d pick it up. We were waiting because I have another book coming from another library, but it was something to do! It made me happy, and Stuart found 2 books, that made him happy too!

After the library, I admitted I still had some energy and wanted to walk. We discussed going to the park, then I asked if we would be driving close to Michaels, because I knew hubby needed glue for models. We were driving right by there so we decided to check and see if maybe we could get in there. It was great, there’s a handicapped space on the side and 3 were open! Bam! right by the door. We were in. And it really wasn’t that crowded once we were inside. We decided to just browse. I’ve been looking for something I can do with my hands. I used to like doing cross stitch when I was younger, but what do you do with that kind of stuff when you are finished with it? I have a lot of paintings that I have no where to put now. Anyone want a painting? So, I’ve been thinking about crochet, but I’m not very good at it, I just can’t keep my tension correct. I have this Knifty Knitter thing that is pretty cool. It’s a tool you use to knit with. You aren’t really knitting in the traditional sense, but it looks neat when you are finished. I decided to work on that again and bought some yarn. Unfortunately, when I got home I found the yarn is too thin, I’ll have to get thicker yarn for this to look right. After that I’ll be making things left and right. hahaha Working with yarn is good for tactile sensations and fine motor skills.

I also got a book called Zendoodle. I love this kind of drawing. (please I don’t want a debate about Zentangles here) So far, I’ve doodled just a little, but I know I’m going to be doodling more. I used to do this a lot, it’s very calming, and it is good for my spacial relations.

I took Valium today when we left as a precaution to try to prevent me from having vertigo. I’ve been having it a lot recently. When we got home today, I started playing with the yarn, and shortly thereafter, the vertigo started. I didn’t get much done today after that. It wasn’t a violent bout of vertigo, but it was certainly not slow. I felt sick, but luckily I didn’t throw up.

The vertigo has been starting and stopping over and over for the rest of the evening.

That was my day today. Hubby took the week off work. I think this is a dumb time to take off work, but I didn’t think about that when he asked me about thinking this week off. There are just way too many other people off work doing things, there’s too much traffic, too many people. You can’t do anything. And we couldn’t take a trip. Heck, who wants to take a trip around Christmas, unless you are visiting family, it’s too crowded.

I’d rather stay home and enjoy the last days of my Christmas tree.

Tomorrow I’ll pay for today a bit. I’ll need to take it slow because I did so much, but I wouldn’t change a thing. I had fun, and that’s important. Oh, tomorrow I have my yearly physical, so much for totally resting.

If you’d like to take The Mighty’s 30-Day Challenge go to their Facebook page and check it out.

Mindfulness Monday 30 – Beginnings

On December 26, 2016December 24, 2016 By WendyIn Chronic Illness, Mindfulness5 Comments

Picnic with Ants

A visit to the Migraine Doctor

Mindfulness Monday – 33