I feel shame (Shame and Chronic Illness)

I’ve been trying to write a post for weeks now, but I just haven’t been able to get the words to come out. I had a CTA scan of my head and neck on July 26th, that’s a CT scan that shows your arteries. I had planned to post about it, to show you the awful bruise the contrast caused, and tell you how I freaked out when the contrast hit me, but I was actually ashamed that I felt that way. They had a hard time finding my veins, as usual, and I, once again, felt ashamed that I’m difficult. I had a bit of a reaction to the contrast and had a very debilitating migraine and nausea for days. I couldn’t write, I couldn’t do anything. Lorraine was nice enough to do a Mindfulness Monday. I’m ashamed I haven’t written since then.

I feel that I have needed to write and tell you how I’m still struggling with the migraines, how the medication isn’t working, and how I can’t accomplish anything really. But I’m ashamed that I’m not better. I’m ashamed that I keep trying different medications and they don’t work on me. I feel like I’m failing. In our culture we are expected to take a drug when we get sick and get better, if we don’t get better then we aren’t trying hard enough. We should change our diet, exercise more…. You see the stories all the time, how someone beat this or that disease by doing these things. We are expected to fight our illnesses and get better, when we don’t we often feel shame. Or at least, I know I do.

With my migraines everyone has a solution. So many people have or know someone with migraine, it isn’t rare, but chances are it’s episodic migraine not chronic migraine. I’m asked so often, “Do you take medication?” and it’s followed by, “I take (or so and so takes)______ and it works!” I want to scream, “Of course I take medication! I take preventatives, and abortives, and supplements, and I use alternative treatments! Nothing is working but I’m afraid to stop any of them for fear it will get worse!” But instead I feel ashamed that I’m defective. Not only do I have migraines, I have migraines that won’t respond to treatment.

Weekend before last we went out for breakfast with Stuart’s father at our usual place. I ordered a gluten free pancake, when it came I suspected it was wrong, but they have never gotten my order wrong before, so I took a bite. I knew immediately it was wrong. I was poisoned. I called the waitress over and asked and sure enough, it wasn’t gluten free. She apologized and I smiled and just ordered a new one. I looked at Stuart with huge eyes and he just said, there was nothing that could be done now. His father said, “it was only one bite” Stuart explained that it only takes a crumb. I should have told the waitress that I didn’t want anything else and told Stuart and his dad we needed to go home, but instead I was too ashamed. I ate that new pancake knowing that I would be sick within an hour or two. I sat there listening to them talk, while my head pounded, my stomach started to ache and get tight and my bowels started to rumble. I ended up having to rush to the bathroom there and it was obvious my stomach was distended by the time we left. I felt even more shame that I could not hide it.

I’ve never been one who is ashamed of my cochlear implants, I know a lot of people like to hide them, but I like for people to understand that I have hearing loss, because I do get ashamed when I have trouble understanding people. I sit and “listen” to conversations, but I often don’t “hear” them, and I’m too ashamed to keep asking for people to repeat what they say. After you are told over and over that it’s not important, you start to believe it, so I don’t worry about it. Then I get more ashamed when I miss things that I needed to hear.

Yesterday I had a very bad day. I woke in so much pain, but more than that when I’d stand I would see stars and I’d start to black out. I asked Stuart if he could work from home, but before he could answer I told him no, I’d be okay, because I was way too ashamed that I needed him. I was not safe, but I was too ashamed to admit that. Last night was the first time I told him how I felt. Now he is afraid he has done something to make me feel ashamed, and I feel shame that I’ve made him feel this way. I’ve explained to him that it’s complicated.

I’m just coming to terms with these feelings. I’ve tried to put a label on this before and called it guilt, but that wasn’t right, it’s shame. Guilt is feeling that you’ve done something bad. Shame is feeling that you are something bad. So, yes I feel guilty about asking him to work from home because I don’t want to take him away from work (doing something bad), but I also feel shame about it because I am ill and have to ask in the first place (am something bad).

Do you have these feelings? This will be a major discussion coming up with my therapist. Shame is not a healthy emotion, this is something we need to battle sooner rather than later.

The Fight Continues

After a 76 day migraine it finally broke on July 6th, I then went 9 days with 2 migraines that were able to be treated with rescue medications. On Monday I posted about how I believed I was back to my baseline, but I mentioned that I had a migraine at the time and was excited I was able to take rescue meds and believed they would work, they didn’t.

can you see how the right side of my face is affected by my migraine?

On Monday I took Maxalt twice, and Toradol, it eased the pain some, but did not take it away.

On Tuesday I did not use my rescue meds, I used Ginger, my IceKap, and medical marijuana throughout the day, and this kept things to a tolerable level.

I woke Wednesday in excruciating pain, with severe light sensitivity and vertigo. I could not lift my head, or focus enough even read medicine bottles, but I could find the Maxalt in my night stand by feel, so I took that. I texted Stuart by talk to text and asked him to come home to help, because I couldn’t make it to the bathroom. He came home, got me more meds (Toradol, and another Maxalt) and worked from home for the rest of the day. I also used my alternative therapies throughout the day. Wednesday was a very challenging day, but by the end of the day my symptoms had improved dramatically and I was able to sleep.

Yesterday I woke feeling pretty good, the migraine was still there, but I thought it was on the way out. I decided to greet the day with joy and immerse myself in the pool. I had a nice swim, the water always makes me feel better, but I don’t get out there enough. When I came in, the pain started to increase. Then a little while later I stood up, walked across the room, and the pain hit like a hammer, I felt a whoosh, and the room went black. I slowly collapsed to the floor and spent the rest of the day in my chair fighting vertigo. I decided to break the rules and use a rescue medication a third day this week. My doctor had given me a sample of Migranal to try, it’s dihydroergotamine mesylate (DHE) in a nasal spray. I haven’t tried it yet because my insurance doesn’t cover it, but thought I should try it since I’ll be seeing her on the 26th and today would be a good trial. I don’t know if it’s just the sample that’s like this, or if it’s always like this, but this stuff is a pain to get started. You have to break a metal seal on the bottle, pull the plastic stopper out, take the plastic cover off of the sprayer, insert the sprayer in the bottle, prime the sprayer 4 times, THEN you are finally ready to use it. Then you spray it once in each nostril, and do not sniff or tilt your head back (that is oh so difficult) and repeat in 15 minutes. That’s a lot when you are in severe pain with light sensitivity, nausea, and vertigo. It did reduce the pain significantly, however it did not completely break the migraine.

That brings us to today. It’s still there. I’m getting a massage tomorrow from an amazing woman, the last time I saw her I left in the least amount of pain I can remember. It didn’t last long, but wow, amazing. I look forward to feeling her magic.

On the 26th I’m getting a CTA or my head, that’s a CT scan where they use a contrast to look at your arteries. I also see my migraine doc on that day. I don’t think the scan will show anything, but just to be sure. I’m a little wary of it, I’ve had a lot of scans over the last 10 years, that’s a LOT of radiation. How much it too much? Since I can’t have MRIs they use CT scans for everything, that has really been a lot of CT scans.

I am so very grateful for the days I had without a migraine, it is encouraging to know it is possible. I’m also encouraged that the rescue medications are doing something, even if they aren’t taking it all away this week. Living with chronic migraine is a challenge every day, I never know what to expect. I found myself leaving the moment, fearing the future, longing for the past, I am being gentler with myself now, and being here in the now. Today is all I have, I will be here in this moment and accept it as it is. I know I can handle this moment, it is all it is, a moment, and I will deal with the next moment as it comes, not before. There is so much more to my life than my symptoms, it is time to remember that and take notice, each and every day.

Relief. The Importance of Keeping a Medication Diary

Tucson night sky

If you’ve been following my blog you know that I’ve been battling a severe migraine flare since April 20th, I’m so happy to share that I’m finally back to my baseline for my migraines and my rescue medications are once again working so I’m having sweet, sweet relief!! How did this come about? Well let me tell you, this was an ordeal! And it could probably have been sorted sooner if I had noticed something earlier, in the end, I’m glad I wrote about when I started new medications here.

One of the first things I did when all of this started was try to figure out if I anything had changed, had I started a new medication, was I eating differently, sleeping differently….anything? Well I had started Emgality, a migraine preventative, but I started it a month before this started and I was insured that it would not cause migraines. I had also started Viibryd, an antidepressant, but I (thought) I started it in March. Finally after my hospital stay in June, I went through my blog posts and found this post on April 27th that said I started an antidepressant the week before. https://picnicwithants.com/2019/04/27/little-update-from-travels-to-depression/ That was the week the intractable migraine started. The post also talks about how much better my migraines were in March after I started Emgality on February 28th. Ding! Ding! Ding! Could it be that this drug was contributing to this migraine flare? I was going to find out! I looked up the side effects for Viibryd and sure enough, one of the common side effects is “headache” (15%) and one of the lesser side effects is “migraine”. I put a call in to my psychiatrist and a message in to my migraine doctor. Wouldn’t you know it, my psychiatrist was out of the country! Ha! Glad to know my doctors had a good time traveling this summer! So, everyone knows what I did with my migraine doctor, if you missed it, you can check out my post on SPG Blocks here, but keep in mind that I was still on the Viibryd at the time. I got a message from my psychiatrist PA and they said that migraine wasn’t a side effect of Viibryd (Can you see me rolling my eyes?? I read the prescribing information handout that comes from the manufacturer, where did she get her information?) In the call I’d also asked about a couple of other antidepressants that are used at migraine preventatives to see what they thought, I was told that they didn’t go with Viibryd. Umm, I’m not going to stay on Viibryd! But she couldn’t seem to understand that. I can’t say it is all her fault, the front office there is awful! I love my psychiatrist, but it is horrible to try to get messages through, so I decided to slowly taper off of it by myself, and just wait for my appointment which is next week to discuss the rest. And guess what?! After being totally off Viibryd for about a week my migraines dropped to about my baseline, or below.

Since my birthday, I’ve taken a rescue medication once! Don’t get me wrong, I have had more than one migraine, but they haven’t been severe and I haven’t felt the need to take medication for them. At the first sign of a migraine I’ve been taking 500mg of Ginger and it has been helping (this is a great article about the efficacy of ginger in helping migraines). As I’ve mentioned before, I can’t take rescue meds more than 2 days a week, so unless a migraine is bad I normally don’t take it since I often have migraines an average of 5 – 6 days a week. I save those 2 days for days I have something planned, or days when it is very severe.

I just noticed that today is the 15th and I haven’t taken migraine meds since the 5th! Wow! Perhaps the Emgality is doing something too? I’m really thinking that the Viibryd was messing me up big time. And so far I haven’t noticed my moods dropping since I’ve been off of it. You know, I’ve been fighting a migraine today, but I think I’m going to take something for it. This is great! Maybe I won’t have to save my medication for worse days? Do I dare hope?

To close I’d just like to say that this has taught me to always mark on my calendar when I start and stop medications, and pay close attention to how my body changes. I really thought I was on top of these things, but obviously it can slip by you, especially during busy times and times of high stress. If I had been able to put together that this had been a side effect earlier I might not have suffered for so long.

My Story – A trip to the Hospital – Migraine Awareness Month

We all have our story, this weekend I added to mine.

I’d like to give you a little bit of background on my headache story. Two months before I turned eleven I had my first period, and my first migraine. It was labled a “menstrual headache” and I was told most girls got them. On my 11th birthday we were going to the lake to go swimming and I was hit with a nagging headache, this headache never went away. I was labeled with allergies and sinus headaches. These labels stuck for many, many years. Now my migraines have progressed to the chronic level, I have a migraine over 20 days a month, and it seems they are becoming intractable. The medications I used to use are not longer working, and I’ve tried many alternative treatments. My daily headache is never below a 3. I also have cluster headaches that normally show themselves in the Spring and Fall, but sometimes more often. I haven’t found any treatments for the daily or cluster headaches. Most days I haven’t given up hope, but I must admit that some days I feel like I can’t go on. That is my history in a nutshell, now for the story of the weekend.

Today is the 54th day of a running migraine. There has been no relief. The pain has been variable anywhere from a 6 to a 10+ (there have been times the pain has been greater than I could imagine).. No medication has helped to relive my symptoms which include much more than pain. When most people think of a migraine they only think of the pain, but it is so much more than that, I experience numbness on the right side of my face, sometimes traveling down my arm, my face sometimes droops, my vision blurs and will double and dim to the point I can’t see, I have extreme light sensitivity, and sensitivity to smells and sounds,, I experience dizziness and vertigo that varies in intensity, and extreme nausea….these are just a sample of the added symptoms that I can experience during at migraine, others can experience different symptoms. Migraines are so much more than a headache they can even occur without any pain at all.

At present my neurologist is out the the country. I messaged her office last week and told them my situation and they suggested I go the the Emergency Department to get a “Migraine Cocktail” and some hydration. I voiced my concern about the torture that an emergency department can put me through, the bright lights, the smells, the noise, the wait….but I was assured if I called and reserved a time to come in I wouldn’t have to wait long. We did call and set up a time of 4:30pm on Thursday, I arrived 10 minutes early and was triaged right away, then I waited SIX hours before I was seen. I realize I was low on the triage list, and they had a number of emergencies but sitting there in extreme pain was absolute torture. I almost went home. I had a seizure in the waiting room and no one paid any attention. I do have to put in there that we were in a quiet waiting room with dim lights because of my light sensitivity, but after they were informed, a tech came and took my vitals, but no one else came. I decided it was time to leave. Stuart went to tell them we were leaving and at that time they realized how long we had been waiting, and they got me to the top of the list.

After I was taken to a room I was surrounded by extremely nice nurses and doctors immediately. They made a plan and had medication going within just less than an hour. The doctor told me they had to start on the first cocktail, but he didn’t think it would work on me, because he had a feeling I was a tough case. He said after that they would do a second cocktail and if that didn’t work they would admit me and there were all kinds of things they could do then. Neither of the first two cocktails worked, although the second one did help me sleep. I was admitted, after many hours of waiting for a room

I was started on a new cocktail that was very much like one that I had in the ED, but they wanted to add Imitrex (sumatriptan), I refused this medication because it causes me to have tachycardia. I soon saw the neurologist and he put me on a cocktail of DHE, Toradol, Depakote, and Magnesium every 8 hours for 24 hours. He then told me that if it did not work he could do no more and I would be sent home to suffer there instead of suffering in the hospital.

The cocktail knocked it down to a moderate level, until they stopped it. After they stopped it a new nurse came on duty who had a scent that triggered me. My migraine shot up and I was terribly sick. It did not come down, and I was sent home “to suffer”.

Today I woke up in intense pain that continued to build, within an hour it was so excruciating it was beyond what I could imagine a migraine could be. I was not sure if the pain would diminish. If it hadn’t I would not have been able to carry on. I had to admit my thoughts have gone there, but migraine can kill. All I can hear in my head is, “You can SUFFER at home”

My doctor is the only headache specialist in this area. According to the American Headache Society currently only 416 specialist are certified by the United Council for Neurologic Subspecialties (UCNS) to treat an estimated 36 million migraine sufferers over age 12 in the United States. I’m lucky to be able to see one, but when she is unavailable it is very difficult. She will be back in the office on the 12th, however she has jury duty the first week of July, I don’t have an appointment until July 26th. The doctor I saw in the hospital said he was going to talk to her office to see if he could get me an appointment earlier. I doubt that will happen.

There is a headache clinic at the Mayo Clinic in Phoenix. If my doctor can’t help me I’m considering going to the clinic for an evaluation It is 110 miles away. Does anyone have thoughts on this? I’ve heard some conflicting results from friends about their experiences with Mayo, I’d like to know if anyone has any thoughts.

This is Migraine Awareness month therefore, I’ll leave you with a few more facts about migraine.

  • Migraine is the 6th most disabling illness in the world
  • Migraine often runs in families.
  • Migraine is often misdiagnosed as tension or sinus headaches.
  • Migraine also affects children.
  • Pain does not have to be present during a migraine.
  • More than 4 million adults experience chronic migraine with over 15 migraines per month.

If you know someone with migraine, be gentle, try to understand, Sometimes it can change you. It can steal your life. It doesn’t mean they don’t want to spend time with you, often it means they can’t. They still love you. Love them.

Migraines Suck

Warning: this post may contain whining, feeling sorry for myself, and just plain complaining, but most of it is simply the way things are right now….it sucks, I accept that, but no I don’t like it and I wish it were different.

The last two weeks I have experienced some of the worst symptoms I can recall in many years. I woke up one day a couple of weeks ago now, feeling pain creeping up the left side of my head, it felt like my brain was hurting, inside my skull, my brain was being squeezed. It started on the left side and crept up over my head until it covered my whole brain, I could not help but cry out. I woke Stuart and he could only hold me. The intense feeling of motion, the pressure in my skull, the extreme nausea…it was horrible. Finally it eased to the point that I was able to simply pass out. Then it came back! This happened three more times. I decided sleep was not going to help, so I got up. It continued to happen throughout the day, no matter how much medication I took. Nothing worked. That was the beginning of my walk deeper into hell.

I’ve barely been out of the dark, the light sensitivity has been more intense than I’ve ever experienced it. Often I have not been able to get out of the dark at all. For days on end I couldn’t look at my phone or computer. I’ve been having the feeling of intense movement all day, with visual vertigo on and off. My vision will tilt, double, and is constantly blurry. For 2 solid days I could not focus enough to see much of anything, I just sat in my chair curled up in a ball, with sun glasses on, a towel on my head to further help block out light, an ice pack on top of that, staring at the TV watching shows that I’d seen over and over, just so I knew what was going on, since I couldn’t really focus enough to read the captions and often couldn’t even see what was going on at all. It’s bad enough to be in severe pain and dizzy, but to be forced to have nothing to distract you from that is torture. I tried to meditate, I tried to make up stories in my head, I tried to think of nice places, nothing worked. I was trapped sitting in a chair with my pain, confusion, and vertigo with nothing to help relieve it. I knew at that moment, if I had to live like this forever, I wanted to die.

I continue to fight this. My baseline headache never gets below a 5 now (I have daily headache all the time that normally hovers around a 3 or a 4). Every day the pain gets to at least an 8 for a few hours, and will spike to a 10 on and off. I continue to have all the other symptoms, sometimes they are worse than others, but they are always there. The nasal spray (Zomig) she gave me to try did not work. It’s kind of obvious that triptans have stopped working for some reason. I believe my head has gone crazy because it has gotten no relief. Normally I do get some relief from triptans, so the nerves have some time to reset, a little at least. (my 10 precious days a month when I can take meds gave me a few hours) Now there has been no relief so the nerves are constantly firing and just going crazy. My neurological and vestibular system are on over drive, what is triggering me this much, I have no idea, all I know is that my head is a mess, and I’m miserable.

Now my doctor is out of the country until June 12th, and she has jury duty the first week of July, so she had to reschedule my appointment to July 26th. I admit when I heard this I had a complete break down. I sobbed and sobbed, which of course caused more pain…ugh. But them I thought, I’ve lived with this for so long, a couple more months will not kill me, and I can go to the ER if I absolutely have to. I must admit though, I’m afraid to go to the ER, they treat migraine patients like drug seekers or fakers, the bright lights and noise there is torture, the stress of waiting hours….it makes me worse before they make it better. It’s so scary.

The good news is, her office did get the sphenopaltine ganglion block approved, so I will be getting that when I see her. It’s very interesting, she will actually be teaching me how to do it so I can do it at home. They are also working to get the Migranal approved, it is the Dihydroergotamine (DHE) in nasal spray. I have DHE injectables at home. I haven’t used it because you can’t use it in the same day that you use a triptan, and I had gone over the amount of days I can take meds for the month. When I’ve had intractable migraines in the past, not with the extreme symptoms I’ve been having lately, my previous doctor prescribed a DHE protocol of having 3 shots a day for 3 days to try to knock it out. We are going to start that today. Hopefully I’ll get some relief.

This has taken me two days to write and I’m sure it doesn’t read quite right because my brain is mush, and I know there are things I’ve left out, but I really tried. I even put in a couple of links. Woot!



Week and a day in review

I didn’t do it. I intended to do it. After I missed one day, I still thought I would do it, but didn’t write a single journal entry this past week. I’m such a slacker! I still kept up with my migraines on the Migraine Buddy app, so at least I have that information. Now let me share some of what’s been going on this past week.

On Saturday I had a vestibular migraine so debilitating that I could not walk without assistance. I stayed in a dim room (I really want black out curtains), in silence, with ice on my head all day. (The symptoms I was experiencing included vertigo and dizziness, light sensitivity, noise sensitivity, scent sensitivity, nausea, cognitive impairment, blurred vision, and numbness and drooping of the right side of my face. It was a cloudy icky day.  Finally around 8:30 that night it started to rain.  When the barometric pressure eased so did my migraine, just in time for bed.

On Sunday we went to have brunch with Stuart’s Dad and his wife at her home in memory care. It had been too long since we had been there for a visit, it was nice, but we sat in the little restaurant for way too long for my physical comfort level. By the time we left my back was hurting pretty bad, and I was starting to get pretty grumpy.  I had been feeling so much better since starting the new anti depressant, but Sunday I was touchy, sad, and down on myself. I knew I missed a dose on Friday, but dang. Then that night I realized I missed another dose, I was so angry and ashamed I couldn’t even look at Stuart. (overreacted?)  When I saw my psychiatrist on Tuesday I found out that the prescription she called in was for the wrong dosage, so for the last week I have been taking half the dose I was taking the week before. Oops. So no wonder it really messed me up when I missed a couple of doses!  I’m trying new strategies to remind myself to take my meds with breakfast!  So far so good!

Back to migraine talk. I mentioned in a previous post that I messaged my doctor and asked about a new rescue medication because the Maxalt isn’t working any more. I finally heard back from her, there was a problem with their patient portal, after it was fixed I heard from her right away and we’ve talked a couple of times since then, so I feel better about that. Here’s what’s going on there: She suggested one of two things, trying Zomig nasal spray (it is another triptan, but could help more in this form) or try Migranal nasal spray (it is DHE in nasal spray form). I’m trying the Zomig because my insurance will cover it (still cost a lot), my insurance will not cover the Migranal, however, if the Zomig does not work we will appeal to the insurance company to see if they will cover the Migranal. She is also trying to get another treatment approved, a Sphenopalatine Ganglion (SPG) Block. The SPG is a group of nerves linked to the trigeminal nerve, the main nerve involved in headache, and is located behind the nose. They use a catheter through the nose to apply lidocaine to the SPG. I’ve been reading about it, and I’m not sure exactly how my doctor is planning on using it with me.  From what I’ve read it has been shown to reduce chronic migraine frequency and pain severity over a 6 month period after having the procedure done twice a week for 6 weeks. So yeah, I’d like to try that.

The above was written last night, May 16th, I thought I’d finish this up this morning and post it, but today did not go as planned, following is a recap of today.

Today started out pretty dang good.  I decided to try to start the day completely silent to see if my migraines would hold off for longer.  It was a nice way to start the day, the silence kind of forces me to be more mindful. I ate breakfast outside, sat out by the pool, did my breathing exercises, and started to do more of my yoga exercises, but the sun was too bright. I was still feeling good so I decided to sweep the front porch and patio. Gaah! That was the biggest mistake of the week! I got about half of it done when the pain in my back started to get too much, I slowed down and tried to get to a good stopping point. Then my vision got wavy, the pain started in my head, and my back seized. Oh boy. I dropped everything where it was and got inside as quick as I could so I wouldn’t fall down outside. Things calmed down and I thought things were going to be fine, I just had to rest. After about an hour things were going good. I was ready to get up and maybe do something, then the vertigo started, and I was not going anywhere. The rest of the day has been filled with these on and off sensations of vertigo and pain.  I wanted to try the Zomig, but I’ve already taken medication 7 of the 10 days I’m allowed in a month, I decided to save it for days when I have to be out somewhere, or really want to do something fun.

Speaking of something fun, we are planning on going to the botanical gardens this weekend, it is supposed to be a very nice weekend for it.  Cross fingers and toes we can make it there, I really want to go to the Butterfly House, and it closes for the season soon.

the photo above is by the pool, it was taken this morning.  It is my favorite spot in the yard, especially this time of year with the yellow, red and purple blooms.

Journal Days of May

from my walk on Sunday – Prickly Pear in bloom

This month I’m going to do something very different, I’m going to try to keep a running journal of the month, so you might get a bit tired of me.

The idea behind this is two fold, I want to pay attention to my moods, and really see how this new antidepressant is working; and I also want to have a goal of accomplishing at least one thing a day, no matter how small that one thing is.

I’ve been feeling pretty low lately about how little I’ve been able to accomplish because of my pain, I want to prove to myself that I am more than my pain and accomplishments come in all sizes and all should be celebrated. I’m hoping by committing to posting about this on a regular basis I will force myself to stop thinking of the things I can’t do and pay attention to the things I can.

Today I woke with the continuation of a migraine from yesterday, that continued from the day before. I had an appointment with my therapist at 11am so I took a Maxalt and drank a little caffeine hoping it would take the edge off and make the day more bearable, unfortunately, it didn’t. In the waiting room there was a lady sitting directly in front of me and one sitting beside me, they obviously new each other and were having a conversation in normal tones. I was struck by the fact that I could not understand more than the rare word here and there despite the fact that it was a very quiet room. Once again I wondered how I could meet people and socialize. When I left I planned to go by the grocery store to pick up a couple of things but the pain was so great I thought I would throw up before I made it home. I took a second Maxalt when I got home, but again, it simply did not work. I decided to message my doctor and ask if there is another rescue medication I can try as Maxalt seems to have stopped working. I am still hopeful that the Emgality will help, but I need something to get me through the moment.

Today I made it to my therapist appointment! I had a lovely mindful moment with my dog, and a few other mindful moments too. I attempted to do a Body Scan meditation, but I didn’t finish. I will try to do it again before I sleep tonight.

I’m trying hard to not focus on the fact that I can’t cook dinner tonight, or get the dishes out of the sink because my back and head hurt so damn bad. So I’m avoiding the kitchen.

Mini me update

Daffodil – Charlotte, NC
Wild Mexican Poppy – Tucson, AZ

I’m Still Here I didn’t mean to scare anyone with my last post, no I’m not closing my blog, I have just been feeling a little low lately and it’s been hard to put words together and write coherently. A little depression has gotten hold of me, but I’m coming out of it. I tried looking at everyone’s blogs today but my reader is not working right. I’ve been terribly homesick, I have a friend back home who has been extremely ill for months now and I can’t be there with her and it’s breaking my heart. I can only hope that my virtual support is helping a little. My sister hurt her knee pretty bad, I’d like to be there for her, but alas I can’t. I’m kinda sure that she wouldn’t allow anyone to take care of her, but I’d sure like to try. She’s taken care of me time and time again, it’s time for me to be the carer. And I really miss Spring in the Carolinas. Spring in the desert is beautiful in it’s own way, but it’s not like it is in the Southeast. There isn’t this sudden explosion of life everywhere! You open your door and flowers have bloomed overnight. Trees are suddenly green. It’s magical. I didn’t think I’d miss it so much, but I do. Stuart says he will miss the fall, so we have decided to go to Charleston, SC for our anniversary this year in September. Hopefully he can see a little bit of Fall weather, and we can see people we love. Looking forward to that makes me a bit less homesick and I think it helps my depression.

The Move and Service Dog About us moving…no we aren’t moving far away, we are still going to be in Tucson. This is just an inconvenience, but how we were told about it really pissed me off. Right now we are renting a house that we didn’t expect to be renting but a few months until we found a house to buy, but it ended up that we needed to wait a few months before we could commit to buying a house. We can start looking again in June…or July, I don’t remember which. Our landlord has been working on the guest house and told us he did not expect to have it completed by the time we would need to move. On Friday I was standing out by the pool talking with him for a long time about us going to meet with a dog breeder about getting a dog to train for my service dog, this has been in the works for a long time and he knew all about it, he has been excited for me. Nothing was mentioned about the possibility of then wanting to sell the house soon, or us having to move. That evening our utility bill was left on our door with a note on the envelope that said our lease ends April 30th and the guest house should be finished by then, so we need to discuss options. My stress meter jumped WAY HIGH! The thought of moving again and then having to move again a few months after that, simply threw me for a loop. I don’t blame them, it is a financial decision, not an emotional one, but it sure leaves us in a lurch. There is a possibility that we won’t have to move. They need to do some work on the house that may go into the summer, and they believe that if they don’t sell during the summer they will miss their window for the best profit because it has a pool. People don’t like to buy houses that have pools in the winter….weird. We will know in about a week, if we do have to move we’ll have at least a month to move. We will then have movers move our stuff to a storage locker and move into furnished corporate housing for a few months, that way it’s really only one move. We’d just just have our clothes and stuff, everything else would be packed and ready to go. After we came to that decision the stress was totally lifted. We decided to wait on getting a puppy right now to train, hopefully we can get one this winter. I’m still looking for just the right dog for me. I will be training my dog through HandiDogs here in Tucson, AZ. They are a hands on training facility helping you to train your own service dog. I will have a hearing and balance dog. I will talk more and more about this experience as it happens.

Migraine Specialist I saw a new neurologist who specializes in headaches. She was wonderful. She had read all of my chart before meeting me, she asked all kinds of questions that I can’t remember being asked before. Like “does sleep make your migraines go away?” I’ve had it suggested to me to try sleeping when I have a migraine, but no one has ever asked me if it worked. It doesn’t. I wonder what that means. She asked if I ever get a migraine when having a bowel movement. Sometimes. So many questions!! At the end of all the questions and realizing that I’ve tried everything out there and still have over 25 migraines a month we decided to try one of the new CGRP blocker migraine preventative medications. I chose Emgality because it has been shown to help cluster headaches too, but it is not approved by the FDA for that use yet. This medication comes in an injection that I give to myself with an autoinjector. I had the first dose on Friday, March 29th. I will write a post soon explaining more about what this medication is and my experiences with it. Please wish me luck with it. My doctor told me that her story is much like mine. I not only have chronic migraines, I have a constant daily headache that I’ve had since I was 11 years old, the day I first started my period I got a headache that never went away. My doctor told me that with this new medication she still gets migraines, she gets much fewer migraines, but she does get some. However, she no longer has her daily headache. At that moment I burst into tears. I was so thrilled for her, and the thought of not having pain every day constantly, I simply cannot fathom that.

On a completely different note, I’m getting my hair cut on Saturday. You may not recognize me. I have long naturally wavy, slightly curly hair, but it’s fine. It used to be thick until I went through menopause, sigh. The length is doing nothing for me. I wear it in a ponytail most of the time. So I’m getting it cut! Not sure exactly how short yet, I’m going to need advice from my stylist, but I think it’s going to be pretty short. I’m getting new glasses soon too, I’m just going to look so different. A new me.

Well, I’m up late because I’m fighting a gastritis attack, again. I finally ate some real food today for the first day in a week, and now I’m so nauseous I can’t sleep. I’m off to take a Phenergan and try to rest.

“Change is the only constant.” ~Heraclitus

Playing Keep Away with Medication

I’m so fed up.

An article found in the American Council of Society and Health gives “A Brief History Of The Opioid Epidemic” it list what has transpired since the mid-90’s that gets us to the point we are now. Number 6 is the most important “Deaths from prescription opioids alone are rare”. Yet this is what has been attacked. People are killing themselves now because they can’t get their medication to help relieve their pain. I do acknowledge that opioids were over prescribed for a while, the article explained some of that reason. I remember getting prescriptions from multiple doctors, being told to fill them if I needed them. Often I didn’t, but I can see where that could fall into the wrong hands, and that was the biggest problem, they often ended up in the wrong hands. However, this does not mean you should stop prescribing, or drastically reducing, medication to those who DO NEED IT. People are now killing themselves because they have no hope of pain relief. That is a travesty. We as a nation should not be letting this happen. We as human-beings should not be letting this happen.

image by pixabay.com

Caz wrote on Invisibly Me this week that she was not able to get her regular B-12 shot because they are cracking down on it due to
 the ‘craze’ of ‘fashionable B12 injections’ celebrities touting. Really? B-12?!? What does this say about us, we keep people who need a vitamin away from them because of a fad? Jump over to her blog and read her story, it is eye opening.

If it’s not the government it’s the doctors keeping us from our medication.

In my case it’s my migraine doctor (or insurance company, I’m not sure which yet). I had to find a new migraine specialist when I moved to Tucson. I made the appointment before we even moved. I’ve seen him 3 times so far, each time I’ve had issues with him.

During my initial visit he told me he didn’t believe I had every type of headache I have been diagnosed with, until I said, “I don’t know, that’s what they told me at Duke”, then he changed his tune (he also seemed to check over everything with Stuart, to make sure he agreed with that I said, like I would make this up?) My second visit was Botox, which I didn’t really want, but he wouldn’t prescribe the new headache prevention medications until I tried it, at that visit he boasted he could do the injections in less than 2 minutes (very professional there huh?). The third visit was a Botox follow-up, we were interrupted so they could ask if he would see someone who arrived late, he said he would, then when the nurse left he proceeded to tell us how he’s in such demand he shouldn’t put up with things like that. I had to reschedule my last Botox appointment because of the infection I was fighting. My next appointment is on the 24th, I’m refusing the Botox.

I don’t know what happened, but I just got my Maxalt refill and it is for FOUR pills for a MONTH! I have a headache all the time, every day. Because I’m only supposed to take medication for 10 days a month to prevent medication overuse headache I tend to wait until my headaches get to an 8 or 9 before taking a Maxalt, if I don’t then I will run out long before the end of the month. This often means that I will have a severe migraine for days, or weeks, because I’ve waited too long to treat it.

The prescription is normally for 9 – 12 tablets depending on the doctor (my last doctor wrote it for 18, but she was in a headache clinic where they only treat headaches and could get insurance to cover it.) Maxalt is to be taken at the start of a migraine, if you do not have relief in 20 – 30 minutes take a 2nd one, not to exceed 2 in day. So if you end up taking 2 for a headache and you get 9, you will find relief for only 4 headaches and pray the next headache only needs one. When you have chronic migraine like I do, that means you have a migraine at least 15 days a month, did I mention I have a headache every day? So, even if I get relief from one pill each time that still leaves me with …heck so many migraines without medication I can’t even think, that really sucks.

So FOUR are only going to treat 2 – 4 headaches, see the problem?

Right now I honestly can’t say if this is an error, or if the insurance company did something screwy, or what. If the insurance is the problem then that’s a whole other issue, which is also a thorn in the patient’s side.

We should never be made to feel that our medication is being held hostage.

No matter the reason, the 24th will be the the last time I see this doctor.

I am seeing a new specialist in March who is with the Center of Neuroscience. It took me over 3 months to get in, but I’m okay with that if she is as good at my headache specialist at Duke and Carolina’s Headache Center. I’m really hoping to try one of the new migraine prevention medications.

**Everyone should read Kara’s comment to this post it is excellent.

Medical Marijuana, how I got my card

*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.

medical card

20180925_111941.jpg

 

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)

20180925_111619-e1538168714276.jpg
Ads found in the Tucson Weekly  (I’m not against recreational use, but if this is a medicinal only state, then treat it like medicine.  The ads like those above give medical patients a bad name.)

 

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.

.