Early yesterday the barometric pressure took a nosedive and my head went with it. My head started to throb and the light was excruciating; I took meds and carried on…or I tried to. I realized I wasn’t up to grocery shopping or cooking to I looked in the pantry and threw a few things in the slow cooker for soup. Then it was a sit in the chair and knit kind of day, and I was okay with that.
After Stuart got home we had soup…I’m so thrilled with how well that soup turned out, btw. I left the room to go to the bathroom and I felt it hit….the bottom dropped out of my stomach, I got all hot, and my view began to spin….vertigo. I leaned, for support, with my forehead and palms resting flat on the wall before me, knowing if I moved I would fall down, I called out for Stuart. He came and helped me to the bathroom and back to my chair. The worst had not arrived…
As we got ready for bed I took my nightly meds and started to settle down when I started to feel bad, really bad. I mentioned to Stuart that my meds were kicking in really fast and I was feeling loopy. (this does not happen, normally I take my meds and I start feeling sleepy, I read some and then go to sleep, I never feel “loopy” from my night meds) I decided to just lie still and try to sleep, then I suddenly got hot all over and my stomach wanted to rebel! I laid very still trying hard not to move my head, but it didn’t work, the room began to spin and I felt like I was moving….vertigo…again…damnit!
I tried so hard not to disturb Stuart. He has to get up really early to go to work and I hate when I have to disrupt his sleep. He stirred a few times and I admitted I was sick but told him to go back to sleep. I knew I could handle it, at least I told myself that. I did sleep some, on and off, all the while feeling like I was moving. Every slight movement of my head caused the room to spin faster, and my stomach to lurch. I was not doing well, but I was dealing with it. I survived the night, and I didn’t vomit, that is a miracle.
Today, I still have this feeling of motion and if I turn my head quickly the room spins, but for the most part it settled down. Now it’s all the other symptoms that go with vertigo that are still getting to me. The gastro-intestinal upset, the extreme fatigue, the anxiety, and, of course, my balance is completely compromised. It’s been a challenging day.
As I sit here writing this I’m reflecting on this illness of mine and how it has manifested itself over the years. It came on sporadically, having severe vertigo attacks once or twice a year without any other major symptoms, then it turned into me having vertigo multiple times a day, sometimes minor, sometimes very severe, I was basically bed bound for almost 3 years. Then less than 2 years ago I started having less and less vertigo and the attacks I had were not nearly as severe as they used to be, I have been so much better that I started to drive again. I even bought a car a couple of weeks ago. Now, I’m being reminded that this will always be with me. I will never escape Meniere’s disease, and I’m scared.
The fear escalated through the night and all day today. My thoughts keep running to the “what if”s. What if this is a new stage and it’s worse? What if I can’t drive and I just bought a car? What if I need more help than is available now? What if?????
Can you see me spiraling out of control?
Time for a reality break. Yes, I have Meniere’s and I always will. Yes, it is unpredictable. Yes, it could get worse, or it could get better. Nothing is certain. Life is not as I expected, so I will change those expectations, or better yet, I won’t have any. Now, it’s time for a deep breath and a good night’s sleep. Tomorrow is a different day.
*this is solely my experience, it may be different for others. I live in Arizona, the requirements can be different for different states, and the type of product offered can be very different also. You can read a good article about the whole process on Leafly, here.
As soon as we moved to Tucson I started the process of getting my Medical Marijuana card. I received it on my birthday (July 2nd). Here’s the process I went through:
First I had to get an Arizona Driver’s License, thankfully I kept my license up to date even though I hadn’t driven in years. To get my license I had to prove my identity and prove I live here, I took a copy of our lease and mail that had been forwarded from our previous address. Within an hour after arriving at a DMV I had my temporary license in hand, after 2 weeks I received my official license in the mail. Very shortly after that I went in to apply for my Medical Marijuana Card.
To obtain a Medical Card from the Arizona Department of Health I needed to take my medical records that proved I have been dealing with one of the approved conditions on the list for over a year, in my case severe migraines, to a doctor to see if I qualify. To find a doctor who will do these referrals was pretty easy, I just looked in the local free paper, there are plenty of ads (I actually think this is kind of weird) I saw an ad that looked a bit more professional than some of the others and emailed them (as most of you probably know, I don’t use the phone because of my hearing loss). The doctor I saw is a Naturopathic Doctor, she reviewed my records briefly and checked my vitals. She told me a little about Medical Marijuana, and told me I should receive my card in a couple of weeks. Oh, I also had to pay a fee to the doctor and a fee to the state, the doctor fee can vary, the state fee is set. You can get the recommendation from the doctor and then file your own paperwork online with the health department, but I decided to pay the extra little bit to have the doctor’s office do the filing for me, they even took my photo for my ID. So to break down the cost, the office visit was $100, the processing fee (to have them file all my paperwork) was $20, and the state fee is $150 so the total cost to get my the card was $270. The state fee is $75 for those with a SNAP card (Supplemental Nutrition Assistance Program)
If you are interested in even more details, this link will send you to the center where I saw my prescriber. Actually it isn’t “prescribed”, it is recommended, doctors honestly don’t have enough knowledge about the efficacy of marijuana (the different strains vary in what they do, some are sedating, some are energizing, some help pain, some cause paranoia…..there is no way to actually just prescribe marijuana like you do other medications, you have to know all the different aspects of the different strains and delivery methods, therefore they really have no idea how to dose it. The center that I went to offered a 15-minute Complimentary Consultation to discuss the available types and delivery method for cannabis, and suggested strains to help with my condition. They also suggested a dosing schedule. I felt this visit too short, however, since I had already done a lot of research I didn’t need a lot of guidance (or so I thought), but I welcomed the advice on strains and dosing. The center also offers a couple of workshops, one teaches how to make edibles because it’s much cheaper to make your own, (these are an additional cost).
After receiving my card I visited a Dispensary that is located close to my house. (since then I’ve done some research on the different dispensaries in the area and I will make sure to take advantage of the best deals, it kind of blows my mind that they offer sales, I thought all the dispensaries would have the same prices and the same products, but it can vary greatly. I should note that the dispensaries are non-profit, however, some also sell paraphernalia, I don’t know if they are allowed to make a profit on that, it seems like they should.
When we arrived at the dispensary someone greeted us at the door and welcomed us in. We walked into what appeared to be a somewhat large lounge, the actual shop was in another room that had to be opened for me to go in. Stuart was not allowed in the shop with me even though I told them I needed him to hear, to compensate they had a pen and paper so we could communicate that way if needed.
A very sweet girl met me at the door and gave me a tour of the shop. She pointed out a cart that contained CBD products only and told me that anyone could come in and buy those, they simply took the cart out to the lobby and had them shop from there. I noticed that she kept pointing out the strains with the highest amount of THC, they are more expensive, so I was wary about taking her advice as to what I needed. (I have since been back to this dispensary and another and found the people I spoke with very knowledgeable and were able to really help me figure out which products to try.)
There are so many different types of delivery methods, smoking, vaping, tinctures, transdermal patches, various edibles (from cookies to hard candies), drinks, and concentrates….so much it is mind blowing. The doctor I saw recommended I use a tincture and vape. A CBD tincture 10 mg, 3 times a day, as a migraine preventative; and a CBD:THC 1:1 tincture to help me sleep. It was also suggested I vape for acute pain, since I have a dry herb vaporizer I was given the name of a few strains that would help, I was also given the strength I’d need if I wanted to use an oil vaporizer. This was a good starting point, but I have a lot more to learn. This article can give you more of an understanding of what CBD and THC are and what they do: “CBD vs THC: What’d the Difference?” (I have found the best information on Leafly.com)
In my next post I will tell all about what I’ve tried so far, and things I wish I knew before I started this journey.
****NOTE**** I admit I’m very nervous about writing this article. Please be kind to me, do not treat me as a drug seeker. I am not looking to get “high”, I simply want the pain to lessen.
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.
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.
Today we visited Aqua Caliente Park, it’s located on East Roger Road in Tucson, AZ. I never expected to see anything like this in the desert. Funny though, I saw several oasis in the Sonoran Desert outside of Palm Springs, CA; when we lived there, yet I never expected to see it here.
You can read about this park on the Pima County website, but I’d like to share some of the sites I saw there, I hope you enjoy them.
First you’ll find the Flora, followed by the Fauna. (some of the plants are not actually native, but they’ve been here a very long time)
The fish in the photo by himself was a monster! If anyone knows what kind of fish he is I’d love to know. I’m pretty sure he’s not a catfish; if he is, he looks different than SC or NC catfish. 🙂 ***I just read that the part has grass carp and bass in it, I think this might be a carp. I think it should be noted that none of the fish or turtles are native. However, here are many bird species that call this place home.
The frog was also huge! Bigger than my foot! He was so patient and let us take a photo of him, there was another frog close by, but he didn’t want his picture taken so he jumped in the water very fast.
I had severe migraines all week, I was lucky enough to have a few hours respite and a few more hours with the pain reduced enough that I could function, still at a slower pace and I was probably a cranky bitch at times, but I’m grateful I was able to enjoy part of the weekend.
*I have one last photo to share, but I’ll save that for Mindfulness Monday 😉
**Remember all photos and artwork on Picnic with Ants are personal property and are not to be shared without permission from the creator. (in this case, Wendy Holcombe took all the above photos and is the sole owner of all rights)
I know you can normally find Mindfulness Monday here each week, I tried, but I haven’t been able to write much and I thought I’d explain why. (it has taken me many days to write this post, so bare with me…mmmkay?)
You may recall that I had De Quervain’s tenosynovitisin my left wrist/thumb earlier this year (you can read about it here), but you may have missed that I now have it in my right wrist. The left wrist was treated with a cortisone shot and since then I’ve had no problem. I’ve had 2 cortisone injections in my right wrist and I’m still in pain. (you can see pictures from the first injection here) I had the second shot on my birthday (July 2nd) my wrist felt better the first day after the injection, but by the second day I was back to the original symptoms and by the 3rd day it was actually worse. When I went in for the second injection he gave me the option of having surgery or trying the injection again, he told me that if it didn’t work to just call and schedule the surgery I didn’t even need to come in again. So I chose to try the injection again, to say those injections are not pleasant is a huge understatement, but I was really hoping to avoid surgery. After a week, when it was evident that the shot didn’t work, we called to set up the surgery and were told that it was too soon after the injection, I have to wait 4-6 weeks. I was not a happy person. I have a lot of limitations because of this issues; I can’t write or draw, I have extreme difficulty brushing my hair, typing, cooking, picking things up with my right hand, swimming…I’ve wearing a brace that holds my wrist and thumb stable, if I don’t wear the brace, I can’t do much at all…unfortunately the brace has started to cause issues on it’s own,
so I have to stop wearing it. The good news is that the surgery is almost always successful, and it’s very minimally invasive, in fact they often do it with local anesthesia. (I will admit I’m a bit intimidated by that, I don’t want to see them cut on my arm…ewww, but I also hate going under general anesthesia, so we’ll see) I was having a hard time accepting that fact that they were making me wait for the surgery, honestly I was pretty pissed; then I remembered that the way to happiness is acceptance. I decided to look at the whole situation differently. It’s only a few weeks difference, they aren’t saying I have to be stuck like this forever. I stated taking extra supplements that are supposed to help with joint and inflammation issues, hopefully this will reduce the swelling and some pain. (if you’re interested I’m taking extra turmeric, collagen, glucosamine..I think that’s all) Even though I’ll still need surgery, if the swelling is down, it should help with recovery. Accepting this situation made life a bit happier.
On another note, I’m having increased migraines, often with migraine associated vertigo, and cluster headaches. When we first got here my head actually felt better, but that didn’t last long. Bright lights are a big trigger for me and it’s really bright here, more than that, now it’s monsoon season so the barometric pressure has been all over the place with crazy storms almost every day, my head is definitely feeling it.
I’m also having a lot more cluster headaches and I don’t have anything to help them. I saw a new headache specialist about 3 weeks ago, I wrote about it here. I felt optimistic after that visit, but I haven’t received the gammaCore that he prescribed, it was supposed to arrive in about 5 days. We called to find out the status and no one called back, so we called again, and still no call back. I know that the office was moving but that doesn’t excuse them from paying attention to their patients. **Update** They called late yesterday and it seems that the doctor didn’t have us fill out a form that he should have, so it delayed everything. The nurse who called said she’s fill it all out and we could sign it the next time we are there, so the gammaCore is now on it’s way! I should receive it by the end of the week! Thank goodness. (the gammaCore treats both cluster headaches and migraines! again, Thank Goodness!!
So that’s what’s been keeping me away….along with other stress, but that’s for a different day when I can actually type without being in intense pain. Hunting and pecking with my left hand is not fun. 🙂
“Accept – then act.
Whatever the present moment contains,
Accept it as if you had chosen it.
Always work with it,
Not against it….
This will miraculously transform your whole life.”
June has been Migraine Awareness Month. I had planned to do a few posts about migraine, what it is, who gets it, how disabling it can be, new treatments….ect… unfortunately I’ve been having some severe migraines this month and simply haven’t been able to focus well enough to write and get all the facts straight. It’s not just the pain of the migraine that has stopped me, it’s all the other symptoms that go with it, the fogginess, nausea, insomnia, sensitivity to light, sound and smells….I simply can’t concentrate or get things done.
New Migraine Doctor – On Tuesday I saw a new migraine specialist. He’s with Banner Health/University of Arrizona’s neurology department. First impression, he was pretty thorough, and seemed to know what he was doing, however, there were some things he said that I felt were just rude, but it may just be his sense of humor that I didn’t get. For example, after we went through my history he looked at hubby and said, “Did you know she had all these issues before you married her?” Then he laughed a little and said he was joking, but honestly that did not make me feel good at all. But he did take the time to go over my records and listen. At first I felt that he was going to be a butt, because when I told him all my different types of headaches (chronic migraine, vestibular migraine, cluster headaches, and Intracranial Hypertension), he said, “I don’t believe it” He questioned if I could have Intracranial Hypertension on top of the rest. I told him I had numerous lumbar punctures and that diagnosis came from Duke, he seemed to understand then that I really have been diagnosed with these things, they weren’t just speculation. We went through a huge list of drugs I’ve tried and if they worked at all, and we discussed other treatments that haven’t worked (acupuncture, chiropractic, a ton of supplements….). He finally said, “So, it sounds like nothing has worked” and I agreed. (Oh, I was given a complete exam, testing all my reflexes, checking my optic nerve….he really was thorough) He left the room for a moment and came back with a gammaCore.
Using the gammaCore – The gammaCore is a non-invasive vagus nerve stimulator. It’s pretty darn cool actually. Most of what I’m including next can be found on the gammaCore site, you can read more about it there if you’d like. https://gammacore.com/
“gammaCore (nVNS) sends gentle, patented stimulation through the skin to activate the vagus nerve, providing relief from migraine and cluster headache pain in a different way than drugs.
The vagus nerve is an important highway of communication between your brain and many parts of the body
The vagus nerve plays an important role in regulating pain”
He gave me a demo and it was interesting. You take this little device and put a gel on the electrodes then place it on your neck, right where you’d check someone’s pulse, you increase the signal until you get the results you are looking for (a twitch of your mouth or side of your face) you keep it there for 2 minutes and it cuts off by itself. They say there’s a beep, but I can’t hear it, I just notice that it stopped, I don’t know why you’d need a beep to tell you that it stops, you can feel it. People like to give sounds for all kinds of things that really don’t need them, in my opinion anyway. After it stops on one side, you repeat it on the other side, and that’s it. That’s a treatment. If pain persist after 20 minutes, do it again. After 2 hours, if you still have pain, or if it returns, repeat a treatment.
I will be receiving my gammaCore in the mail in a few days. The first month is free, I don’t know how much it will cost after that. When it was first approved earlier this year Stuart called to see if insurance would cover it and they weren’t there yet. If it helps, I sure hope that insurance will cover at least part of it. You are supposed to use it at the first sign of migraine pain, unfortunately I am NEVER without a headache, so I need to use it at the first sign that it’s getting bad. I still don’t feel that the doctor understood that I have a headache ALL THE TIME. I actually plan on using it as often as I can to see if I can get some lasting relief, maybe I’ll actually have a day without a migraine! I am cautiously optimistic. If it doesn’t work, I haven’t lost anything. If it does work, I will have to decide if I can afford it.
One HUGE thing I hate about the gammaCore is that it’s disposable. Why can’t they make it so you can charge it or change the battery or something, having to replace this device every month is so wasteful and bad for the environment. I’m having a very hard time coming to terms with that. I can only think that they do it this way so that people will have to buy a new one each month, that’s just a rip-off. What am I supposed to do with all these used devices? If nothing else, they need a recycling program. (Yes, I will be suggesting this to them)
Medical Marijuana – I also had an appointment on Wednesday to get approved for my medical marijuana card. Medical marijuana is legal in Arizona and severe migraine is on the list of conditions that can be treated with it, so I decided to apply. I should get my card in a couple of weeks.
Full disclosure here, I have been using marijuana to help me for a couple of years now, but I had to rely on what I could get on the street, I don’t know the strains, or anything like that, so results have varied. Sometimes when the pain hits I can vape a little and it is gone, other times it just makes me feel funny, and other times it does nothing. I’m hoping that getting it from a dispensary where I will be assured of quality and will know what strains and hybrids I’m getting, I will be able to medicate more successfully; more pain relief with less high feeling would be optimal. After I started using a little every night before I go to bed (I made brownies) my vertigo has been reduced drastically. When I can’t get it, I have more vertigo again. This is not an approved condition in Arizona (Meniere’s is an approved condition in some states), but it should be. I can’t be 100% sure that it’s the marijuana that has helped my vertigo, but it would be some strange coincidence if it isn’t. It even helps stop an attack….if I start to have a vertigo attack I will vape just a little and it will often stop it, even if it doesn’t stop the vertigo, it stops the vomiting. I cannot stress how important that is. The only reason I will go to the ER with all of this (vertigo or migraine) is if I’m also dehydrated. Throwing up for hours on end will cause dehydration, I know that the marijuana has stopped me from going to the ER numerous times. I’m so very grateful I have found some relief through medicinals.
Now, it has taken me many hours to write this post, so I will close for now. Hopefully my head will calm down soon and I will be able to write more often. I would like to thank Lorraine for being so kind and helping me keep up my weekly Mindfulness Monday posts. They mean a lot to me and it was really hurting me when I couldn’t post. Thank you Lorraine, you are the best, I love you my friend!!
Have any of you tried the gammaCore? If not, would you?
How about medical marijuana, have you tried it? Did it help?
Today I’m happy to introduce a new friend, Kim, from her blog, I Tripped Over a Stone. She is an amazing writer; I am so pleased she decided to write a little post for us. Please jump over to her blog and check her out, you’ll be so glad you did.
Hello my name is Kim. Wendy asked me to scoot over here from my blog and do a guest post for her. I happily accepted. You see, I consider Wendy a friend. We are similar in many ways, besides having invisible illnesses, we have the same kind of humor. I have no doubt we will one day meet in person.
I have Fibromyalgia Syndrome, Wendy has Meniere’s Disease. These are classified as invisible illnesses and both are chronic conditions. Neither is really a great one to have. Would you want want vertigo, inner issues and migraines or would you pick constant pain, difficulty sleeping and cognitive difficulties? Choose. Yes, choose right now! Fibromyalgia Syndrome or Meniere’s Disease?
Now that you have picked your illness, how would you handle this new, life altering, invisible illness? Would YOUR life be over? The answer is yes. Your life, as you know it, will be over. You will have to say goodbye to the old you and hello to this new person who feels like crap most of the time and is a shell of who you worked so hard to become. You will probably lose your job, most of your friends, and some of your family members. Since your illness is invisible, you will be deemed unreliable even though its your health that’s unreliable, not you. You will be scoffed at for being on any form of assistance and called a liar because you do not look sick. Welcome to your new life. Now you get to choose again! Are you going to be a Debbie Downer or a Little Miss Mary Sunshine? People usually pick one or the other. Debbie and her self-defeating behavior; why try when nothing will change, there is nothing left for me in this life, I am of no use. Now Little Miss Mary Sunshine knows everything and it is making a brand new life, finding the right doctors, support groups, and will forge ahead! These are the personas we sometimes show others. In reality, we are sick and tired of being sick and tired. We just want the pain, the vertigo, the migraine…to end. A cure would be great! Until then, we take our medication. Sometimes we will go to extremes and have surgical procedures, with no guarantee of a positive outcome. And we read everything; news of every new pill, treatment, therapy, hoping we will stumble upon our way out of this illness. So who is the persona you show to the outside world, Debbie or Mary?
Ok, you can be yourself again. I am am not very found of Debbie or Mary but in a pinch I will become one or the other. I’m never quite certain who I will pick, it depends on the circumstance. It was not fair of me to expect you to choose either. But life is not always fair!
In closing, Wendy and I will continue on our individual health journeys with a little help from each other and you! Being able to tell our stories and allow people to see us is quite terrifying at times. But somehow our paths have led us to this place and we are so very glad it did. We have been given a gift! A place to share our lives and the ability to meet such wonderful and endearing readers of our posts.
I thank you, Wendy. I enjoyed being your guest today.
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.
Friday follow! Create a must follow list for your community: • Top 10 Tweeters • Top 10 blogs • Top 10 Facebook pages
There are so many amazing people, it is hard for me to pick just a few to pass on to you, but I’ll give it a try. If I don’t mention someone it doesn’t mean that I don’t think you are great!! It just means I ran out of room.
Tweeters worth reading their tweets on Twitter.
@HearingHealthM (Timely information and lively insights for everyone who cares about hearing loss)
Little Engine Post. Write a list post with 10-15 lines that start each with “I think I can…” Write 5 lines at the end that start with “I know I can.” They can be big goals or something that’s been on your to-do list for the last few weeks- it’s all up to you.
I started writing this post and listed all these things under “I think I can” and realized that they all should be under “I KNOW I CAN”! This post will list a lot of things that are a challenge, but I KNOW I can do it!! It’s a pretty random list, things that came to mind as I was writing,and it’s in no particular order.
I KNOW I can finish this blogging challenge. (having a chronic illness can make every commitment a challenge, but I know I can do it!)
I KNOW I can visit two friends in one day this weekend. (this could prove to be a challenge. I will be visiting them after riding in a car for 3 hours. I hope all will go well. I really want to see my friends, I don’t have many and I don’t get to see them often. I know I can do it!)
I KNOW I can help cook sometimes. (I actually helped hubby cook on Sunday! Something I love to do, but has become too dangerous because of my disequilibrium and vertigo. However, on good days, I can still help!)
I KNOW I can keep up my blog. (there are times that I doubt I can keep this blog going. When my health interferes it takes so much to keep writing, but I know it is then that I need to write the most. I need to let others see me vulnerable. There may be times that posts don’t come as often as I’d like, but I know I can keep it up!)
I KNOW I can be the best advocate for me. (there is no one who knows me as well as I do, therefore there is no one who can advocate for me as well as I can. My healthcare team beware! 🙂
I KNOW I can have the courage to try new treatments. (sometimes I feel I’m done, I just don’t want to try any more. I know there is not cure. I’m tired of trying. But, I know I have the courage to keep trying. I need to try.)
I KNOW I can go on vacation with my husband. (We’ve been talking about going to visit family that lives close to 3000 miles away, I know I can fly and go on the trip. Crossing all fingers and toes!)
I KNOW I can go shopping. (With my hubby or a good friend I know I can go shopping. I just need my trusty walker and I should be good to go. On a good day that is.)
I KNOW I can take a bath by myself. (this really is an I THINK I can. I may not be able to. I have a lot of anxiety taking a bath or shower because of vertigo and overall disequilibrium. I am better with a bath than a shower. However, sometimes I still have vertigo start when I am in the bath and I need help, FAST. So I think I can take a bath by myself. That doesn’t mean I really can, so normally hubby helps me get in the tub and leaves me and I just yell if I need him.)
I KNOW I can have fun with my husband. (we laugh together almost every day, not matter how sick I am.)
I KNOW I can be a good friend. (I think I’m a better friend now than I was before I got sick.)
I KNOW I can live with this pain. (sometimes I doubt this, but I know I can do it! The pain from the migraines and the degenerative disc can be overwhelming at times.)
I KNOW I can be an advocate for others living with chronic illnesses, especially those with Meniere’s Disease. (I’m just a little voice in a large pond, but I’ll use my little voice as much as I can.)