I’ve started countless posts but, like so much in life now, I haven’t finished any. Do I write about me? How my treatments aren’t working as well as they were in the beginning? How my migraines and vertigo have once again taken over my life? or do I write about the travesties that are going on in this country? I’ve never used my blog as a political voice, I never want anyone to feel excluded or uncomfortable here, but I also feel so compelled to shout from the rooftops that I demand change! I was at the point recently that I simply no longer wanted to live in a world where people treated each other the way we do here. On Juneteenth we celebrated the 155th anniversary of the freedom of the last slaves in the United States. 155 years and racism is still rampant. Our leaders should be bringing us together, instead there is fuel being thrown on the fires.
View of the Bighorn Fire from my home on June 19th, 2020
It doesn’t help that each day I look outside and literally see fire. Normally when I need to escape from the stress of the world I retreat to nature, it calms me, but where I live we are in the midst of a natural disaster. A fire, named The Bighorn Fire, started by lightening on June 5th in the Catalina Mountains surrounding Tucson has burned over 58,500 acres so far and it’s 19% contained. We have an air quality advisory because of the smoke. The masks might help in more ways than one huh?
Speaking of masks, our mayor has issued an ordinance requiring everyone over the age of two to wear a mask when in public (there are a few exemptions) if you do not wear a mask you can be fined or be required to do community service. This is in response to the extreme jump in the number of COVID-19 cases Arizona has been experiencing since we reopened. I applaud her bravery for this, I wish our state, and national, leaders would take such an initiative. I feel it’s my Civic and Human duty to wear a mask. I wear a mask not to protect ME. I wear a mask to protect YOU! Is this political? I don’t think so. This is a health issue. We need to take care of each other. Wearing a mask is to prevent the spread of the virus when you are asymptomatic. Be kind to your fellow human, wear a mask. The life you save may be someone you love.
I think about being here, and talking with you, my friends. I think about sharing my thoughts, my fears, my pain, my dreams. June is Migraine and Headache Awareness Month. Yesterday was Shades for Migraines Day. I was so proud of myself that I at least got a post on Facebook and Instagram with a photo of me and Stuart in our “Shades”, but I had a lot of post planned for this month, they didn’t happen. So many other things happened this month. My migraines are back to being daily. I haven’t had a break in days other than the few hours I get when I go in for treatment, but it no longer last. I still have lots to say on this subject and just because the month is going to end doesn’t mean I’m going to stop being an advocate. I will be posting much more about migraine. I have a lot of information to share, a lot of promise for many people, a lot of hope. Oh, and I will be seeing my doctor in about 3 weeks, so cross your fingers we can get some kind of rescue medication for me. As I said a lot of hope out there. And that’s how I will close for the day…..with hope.
I’m so tired. I’ve experienced fatigue before, but nothing like this. I can’t stay awake, except at night, when I can’t sleep. I’m restless, yet I can’t get it together. I started exercising more this past month, but this past week I haven’t been able to do more than what is absolutely necessary. A little while ago I put some dishes in the dishwasher and now I’m ready to take a nap. I am having a very hard time keeping my eyes open. Lifting my limbs is a challenge. This in conjunction with extreme brain fog, yes writing this post is a challenge, it’s also why I haven’t been able to follow through on promises made. I really hate that.
What changed? I honestly don’t know of anything that has changed so much in the past week that would cause this. I don’t think I’m sick. I’m not running fever or anything like that. My headaches haven’t been worse, they aren’t better, but they aren’t worse. I haven’t increased my medication. I am taking CBD oil during the day, but I’ve been doing that for over a month now, so that’s not new. I’ve actually been taking less this week because I keep forgetting. As it has been pointed out to me countless times by numerous people, I have been under a huge amount of stress, but honestly, the stress hasn’t really intensified recently, it’s been pretty steady for months now. I’m dealing with it pretty darn well, if I do say so myself. The only thing that has my mind racing is our house hunting, it’s taking longer than we expected, and it’s just getting to me a bit. I’ve decided to step back from the search for a few days at least, a bit of breathing room, get refocused and start again next week.
I’ve been using marijuana to help me sleep for a long time. (full disclosure, I was using it long before we moved to a legal state) for some reason it’s not working like it used to. I can’t sleep, yet I can’t stay awake, what’s up with that? When I try to go to sleep at night I just toss and turn, often I just give up for a while and get up. It’s hard not to snack in the middle of the night when you’re up all night. OK, I’m exagerating a little, I am sleeping …some…
My sleep last night recorded on my Fitbit.
Okay, my brain is not working. I’m about to fall asleep…probably not really, but I feel like it. It is storming like crazy right now. Monsoon season is almost over, as much as I’m tired of the storms every day, I’m going to really miss them when we go for months with no rain. Plus, they are really cool.
Some reasons I might not be sleeping…hmmm….pain. My wrist is getting better, I’m not having those horrible sharp pains and I have much more range of motion. I can pick up dishes without extreme pain! That’s awesome! But, now it hurts all the time. The pain is not as intense, but it’s always there. I bought some CBD salve yesterday and I’m rubbing it all round my wrist and hand, not the actual surgical site yet, I get my stitches out on Friday. after that I’ll rub it all over. Cross fingers it helps ease the pain a bit. I feel silly complaining, it’s not that bad, it’s just constant. (sometimes I do still have some sharp pains, I was just reminded of that a few moments ago when I tried to help with dinner)
Thank you all for listening to me rant. I do accept that this is the way it is right now, but that doesn’t mean I shouldn’t try to figure out what is going on and take care of myself the best I can.
I swear if I hear one more person say that something that is wrong with me is due to stress I will scream! I have felt this way for many years. When I was having vertigo daily they said it was made worse by “stress”. When my asthma went crazy, they said “stress”. When I had severe GI issues for months, I was told I needed to reduce my “stress”. You know the last time I looked stress does not cause Meniere’s Disease, or allergy onset asthma, or fructose malabsorption. Don’t get me wrong, I know stress can do a number on you, but I feel like it’s a catch all. If they don’t know, then it’s stress, after all if they can’t fix it then it has to be MY FAULT.
Finally, I am having issues that I think may actually be caused by stress. I will be the first to admit the last few months have been pretty stressful. My mother-in-law was placed in long term care, we moved across the country, I left my sister with the understanding that we may never see each other again, Stuart started a new job, I’m finding new doctors, I have to have surgery on my wrist on TUESDAY, I don’t know how long to expect to be out of commission to recover from said surgery (I hate being so dependent, not having use of my dominant hand is hard), we’re looking for a house (and not finding what we want), we’ve been looking at cars (for me), I’m starting to drive again, we’re living in a small house that I can’t get organized because we don’t want to get too settled since we will be moving again soon, I’m suddenly surrounded by family (some of that’s good, some not so good)…………….WOW. writing all of that out was stressful, and I haven’t listed everything.
This is me with a migraine, the right side of my face gets all numb and droopy. #realmigrainepose
For over a month my migraines and cluster headaches were much, much worse, is this because of the stress, or is it causing more stress….short answer, Yes. I must say though, for the past week they’ve been getting better, I think it’s because of the medical marijuana I’ve started using (more about that soon). I’m having some GI issues that just don’t want to stop. (it’s even waking me up at night, and I haven’t made it to the bathroom a couple of times…is this all from stress, who knows, but I doubt it’s helping), I’m irritable, quick to anger, and just plain grumpy. I’m overwhelmed and in pain, and I’m taking it out on everyone else. I don’t like myself right now. My anxiety has increased, but it’s not too bad, yet. I’ve been a little depressed, but it’s not all consuming. So, there’s a lot to be stressed about and it’s kind of taking it’s toll.
I’m trying to meditate every day, but it seems the more stressed I am the harder it is for me to meditate. I feel like I’m not being very mindful either. I’m living too much in the future. We are buying our forever home and I keep thinking things like, “I don’t want a pool because I don’t want to keep it up when I’m 70”, “I don’t want any stairs because I might get sicker again, and I also we might now be able to climb stairs in a few years.”, and my personal favorite, as I’ve been going though things and deciding what to keep I keep thinking, “will anyone care about this when I die?” ….I just turned 55, I’m not that old, but I sure am living like I am. (except I want a cool yellow car, that will keep me young) I worry about how M’s condition will advance. I worry about Dad, he spends all his time at the home what M, and she’s beginning to have moments where she doesn’t remember who he is exactly. How is he going to handle it when she no longer knows who he is. Then I think about what M’s daughter said, she told me about another relative who had Alzheimer’s and how they told her that they may not know who she is, but they know they love her. I think Margaret will always know she loves Dad. It breaks my heart every day though to see this amazing woman slip away. (she just turned 77)
I really want to get back to focusing on living in the moment and simply not worrying about the rest. Why worry about the now? It’s going to be gone in an instant. I want to invite joy in my life. I want to step away from the drama that I’ve found myself dropped into. I need to nurture my inner self.
Little update on me: My surgery is scheduled for Tuesday, the 7th. It is a minor surgery, I’m not even put under general anesthesia. They just put a little incision on the inside of my wrist below the thumb (on the side, not the palm) and snip a little to release the tendons. When I saw the doctor in Charlotte, NC, he told me that often when the injections don’t do anything that there are actually 3 tendons running through the sheath instead of 2. He said they don’t know why but it often doesn’t show symptoms until middle age. This is even more probably since I have it in both wrist, luckily the injection worked pretty well in the left wrist though. The doctor here didn’t mention it, but he did comment that the orthopedics department at Atrium Health (formally known as Carolinas Heathcare System) is one of the best in the country. (right now they are ranked number 3) So I kind of believe the doctor at CHS.
My migraines have improved some since I started using medical marijuana. Most of what I’m taking is a very high grade of CBD oil. I will write a post soon telling you all about my journey through getting a card, learning what to buy, and my experience in the dispensary. The gammaCore has still not arrived. The doctor’s office dropped the ball when ordering it, then they didn’t put in the request for the free trial for the first month. (they did change offices this month, and my doctor is new and has been the only doctor in the group to prescribe the gammaCore, all of those factors led to the good up) The gammaCore company called Stuart last week and told him that it should be no problem getting it approved by my insurance. If that is the case, why haven’t I received it yet? I sure could have used it this past month, the cluster headaches have been killer (literally, if I thought I had to live in that kind of pain all the time, I’d kill myself. Cluster headaches are called Suicide Headaches, because of that very reason, people will kill themselves to get relief. I start Botox in about a month; I was supposed to start on Thursday, but that was my original surgery date so we cancelled it. The monsoons are causing a lot of severe barometric changes almost daily, I’m sure this has been one of the reasons my migraines have been so bad, so hopefully they will get much better in a month of so, when the monsoons are over.
It’s late and I have a headache, so this post was not even read over to check for errors, please forgive any typos, grammar errors, or other atrocities.
For the past year I have been much less symptomatic than I have in years (not counting my trials with my medication side effects). I was certain that I was prepared if this came to an end. I’m not. Right now, I’m scared. I don’t want to end up like I was a couple of years ago, or what I was like from 2008 – 2016. I’m trying hard to be okay with my life no matter what. I got to the point that I was okay when I was sicker, but it’s so much easier when I’m not.
Before you think that all of this is because of the stress of us possibly moving to Tucson and worrying about our family, my increased symptoms started before my mother-in-law’s accident; I’m not saying stress doesn’t make my symptoms worse, but it didn’t cause it. Although, it may be contributing now.
About 3 or 4 months ago I started having some new gastrointestinal symptoms. I’m having excessive and extreme belching, the feeling that there is something stuck in my chest, and alternating constipation and diarrhea. Oh, and we can’t forget the excessive smelly flatulence, I really wish we could forget that, and I’m very sure Stuart wishes he wasn’t subjected to it. I’ve been put on acid reflux medication, something I was finally able to get off of early last year. I tried 3 different kinds of reflux medication and I’m still having symptoms, they are reduced, but they aren’t gone by a long shot. I had an endoscopy on Tuesday, and it showed…..nothing. A little redness, but that’s it. She did take some biopsies but it’s not expected to show anything. I’m kinda hoping it does. Nothing serious, but something that can be treated and I can get off this medicine, that isn’t taking care of things anyway. A few years ago, I was very sick with gastrointestinal issues and after over a year of testing it was found that I have fructose malabsorption. (I already knew that I was allergic to wheat and I won’t even get into my experience with gluten) All I could think yesterday when I heard they found nothing, was oh no, another year of testing, and possibly finding nothing. Since I’m not throwing up, losing weight unexpectedly, or passing blood; this really isn’t a high priority to doctors. I’m already on a low FODMAP diet and I don’t really want to make another major change to my diet, but I’m guessing that may be what’s going to happen. Damnit!
With the crazy weather we’ve had this winter my migraines have gone out of control! They were a bit better, but recently I’m having migraines every day. It’s driving me crazy. The pain goes from a 5 to a 9, sometimes all in the same day. I’m only supposed to take medication 10 days a month, as of the 12th I’d already taken medication 8 days this month. Crap, crap, crap! They say to take migraine meds at the first sign of a migraine, if I did that, I’d be out of meds in 10 days, instead I wait until it either gets to a 7, or it’s been non-stop for a few days. That really sucks. I will be taking meds a few more days this month. I’m going to start a DHE regimen to see if I can break this cycle. That’s means getting a shot 3 times a day for 3 days. My butt is going to be so sore, and these shots hurt, but hopefully I’ll feel better next week. DHE is not a preventative, but it does a good job at stopping a migraine, and it often works on cluster headaches too. Doing the 3 day regimen is to break the cycle, not to prevent new attacks.
I do start Botox next month. I tried it a few years ago and it helped for a while, but it stopped working. We are hoping I have a better response to it now. My doctor is willing to prescribe the new GammaCore, but insurance won’t cover it and it’s really, really expensive! Hopefully they’ll cover it in the future. It’s shown to help with both cluster headaches and acute migraines. It doesn’t prevent migraines, but it can stop them, and since it’s not a medication I wouldn’t be limited to the 10 – 15 uses a month. There is also 2 new medications coming out later this year for migraine prevention. I hope insurance companies will cover them as soon as they come out, a new migraine prevention medication is desperately needed.
I’ve also been much more dizzy. My balance is worse recently, and the world often spins when I move my head too fast. Last night I kept having vertigo every time I looked up. Just moving my eyes to look up made me spin. That was new, and I hope it never happens again. I think this increased vertigo is migraine related, but I can’t be sure.
Today I had a confrontation with someone and I didn’t handle it as well as I’d have liked. It left me shaky and full of anxiety. When I tried to explain it all to Stuart I got so upset I started to seize. I haven’t had a seizure in a very long time, luckily this was very minor, but it scared me. I am happy to say that I calmed myself during this by deep breathing and chanting with Stuart. Sometimes this mindfulness thing really works. 🙂
Now if I can just take each day as it comes and not worry so much. My worrying isn’t going to make it better. I think it’s time to get serious about my meditation practice.
Anyone out there go from feeling better to feeling worse again? How did you handle it?
How do you deal with it when you know something is wrong, but the tests come back normal?
Anyone trying or planning on trying the GammaCore?
How are you guys doing? Any news? I haven’t been able to read many blogs lately, or be on social media at all, so many things going on. But I want to keep up with all of you, so please, how are you?
Stress is widely known to cause the chronically ill to get sicker, to have flares, to generally feel worse… Stress is an ugly word that I hate to hear my doctors say. “This is being made worse because of stress.”, “You need to get your stress under control.” I can’t tell you how many times I’ve heard this.
The amount of stress I’ve been under the last few months would make the healthiest person feel bad, for someone who is chronically ill, with both physical and mental illnesses this has been a very trying time. I’m sure you are wondering, “What has been going on in Wendy’s life?” Well let me tell ya!
This may not be in order, I’m just going to get it all out. We moved, we had a friend move in with us, I was having vertigo a lot for a while, I’m constantly afraid I will have a vertigo attack, I’ve been having migraines daily for months, my father passed away, I went through all the stress building up to my father’s death, the stress of the funeral….I feel like it has been non-stop.
I’m wondering if my migraines are worse because of the stress? My chronic daily headache now has a base line of a 4-5 where it used to be 2-3, on a 0 – 10 scale. The pain in my neck and upper back due to degenerative discs has greatly increased, I’m in physical therapy for that now. (going to PT is another stress, as Stuart has to take time away from work to take me to my appointments, this time has to be made up, that’s hard on both of us; and some PT sessions seem to make things worse, that’s a stressor too.) I can’t take pain relievers which causes a certain amount of stress too because I never have any relief. My tinnitus has been very loud. Some days my balance is worse than usual. My emotional state is not well. I’ve been depressed. (yes I know I have reasons to be sad, but this is more than that). My anxiety is very high. I am extremely irritable (I’m shocked at how much Stuart and I have been arguing, and bickering, normally we rarely argue) I’m restless, yet tired, excessively worried, feeling like I’m trembling inside, very sad, my appetite is out of control, I am extremely self-conscious, I have very little self-esteem and I keep beating myself up for things I have no control over. I can’t relax; I can’t give myself a break; I’m not being kind to myself. I’m just a mess.
I’ve been having a very rough time. This is upsetting because I’m at the best place I’ve been with my vertigo than I’ve been in a couple of years. I haven’t had a bad attack in almost 2 months. This is surprising because it normally gets worse when I’m under a lot of stress. However, It is often much better during the summer. I know I would be feeling even worse if I was having vertigo as often as I normally do. But I can’t stop having profound fear that it will get worse any moment. I’m having a hard time enjoying this break because I’m so terrified I’ll have an attack at any moment.
I was trying to take better care of myself, but I have to admit in the last few weeks most of that has gone out of the window.
When we are under stress it is imperative that we practice self-care.
Things I plan to do to increase my self-care:
Be sure to see my therapist and be open and honest during appointments.
Give myself a break. This is more easily said than done, but I need to really make a conscious effort to do so. When I have negative thoughts or feelings I want to start being more gentle with myself.
Meditate more.
Take more baths.
Watch funnier TV shows and/or movies.
Read funny or inspirational books.
Cuddle with my hubby.
Cuddle with Max (the cat) and Kiki (the little dog).
Eat healthier.
Do as much as my health will allow that makes me happy.
Be creative.
Stay in touch with those who love and nurture me.
Try to get outside more.
Keep up a gratitude list every day.
Laugh
Sing Silly Songs
Dance
Give my body 10 minutes of mindful attention.
Take a nap.
Take Deep Breaths
Get Positive Feedback (ask 3 friends what they love about me)
Write out my thoughts (for 15 minutes free write what ever I’m feeling, I can tear it up after, just get it out.)
Drink water (I’ve been drinking soda recently, something I haven’t done in years)
How do you take care of yourself? Any self-care suggestions? I’d love to hear them!
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