Catching Up After An Unintentional Time Out

A monsoon storm, the first significant one of the season, crashes a few bolts down just before the gates opened for the Annual Bloom Night at Tohono Chul Park, July 13, 2019, Tucson, AZ. Kelly Presnell / Arizona Daily Star

After my last post about shame I didn’t mean to be away so long. That post caused a lot of reactions, some people seemed to understand my feelings of shame, others got very worried about me. First I want to apologize for not answering every comment, I have been going through an awful time with my migraines and simply haven’t been able to look at the computer much, and I will admit it has put me in a depressed funk, I’m so sorry if I worried anyone. The shame I feel is not overwhelming, I know I made it seem that way in the post, but I promise it’s not all consuming. It is not uncommon for people who have chronic pain or illness to have feelings of shame mixed in with feelings of guilt, I wanted people to know if they do, they aren’t alone. And I wanted people to know, I’d been feeling it and didn’t even realize that’s what it was. Now that I realize it, it’s easier to notice it, and to fight it. I understand that I have no reason to feel ashamed, I also understand that I have no reason to feel guilty, but those feelings still come. They are less now, but they still come.

Something happened this past week that I’d like to share. I’ve needed to cancel plans with our realtor a couple of times because of my migraines, and when we saw him he said, “Hi sickie! Feeling better?” At first I felt shame, then I was angry, very angry, and I stayed angry for days. I told Stuart if he wasn’t our landlord and a good friend of Stuart’s father he would no longer be our realtor. Then I decided he needed to be educated that this is not an acceptable thing to say to a person with chronic illness, or anyone for that matter. I was going to say something to him, but my advocate of a husband beat me to it. Stuart said that he was very apologetic and said that he doesn’t know why he said such a thing, it’s not something he would normally say. He doesn’t know that I know Stuart talked to him, and he hasn’t said anything to me. I’m simply proud that I didn’t just sit back and accept being shamed. This happens to us way too often and we mostly just shrug it off, I think we need to speak up more often and educate people as to how we should be treated. This is one way I will fight my feelings of shame.

Now, a really quick update. Since July 26th, my last visit to my migraine doctor, I’ve had 2 migraine free days, 2 days with moderate migraine pain (5-7), and every other day I had severe migraine pain (8-10), along with many other symptoms, such as nausea, light sensitivity, vertigo… None of my medications were working at all. My doctor prescribed Migranal, but it took until September 4th before I finally got it (stupid insurance hoops you have to jump through) and I can only use it 8 days a month. It’s been difficult. Our 15th wedding anniversary was September 3rd, we wanted to do something special, but instead I basically missed it. Good thing it’s the marriage that counts, and it’s a celebration every day. (HA…how hokey was that?!? It really is special though.)

I saw my migraine doctor yesterday. After my last appointment I had a CTA scan, that’s a CT scan that shows your arteries, it came back normal. I had just started Effexor to try to help my migraines, and I stayed on Emgality for prevention until we saw if Effexor worked. Well, Effexor didn’t work, so we are changing the Emgality to Amovig. You have probably seen the commercials for both of these drugs. They are similar, but a little different in how they work, so hopefully Amovig will be a better fit for me. It can take up to 3 months, to tell if it’s going to work at all. So I’ll know in December. She thinks this last 6 weeks could have been so much worse because of monsoon season. She said it has been worse than last year. I know I was affected last year, but I know I wasn’t this bad.

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.

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.

This, That, and The Other

In just 8 days since I started writing these journal posts I’ve made some observations. The antidepressant is working, and I’m very glad I took the chance and tried it. I’m in a much better place mentally. On the other hand, I do not see a great improvement from the Emgality, I hope I’m wrong, but as of right now my migraines aren’t better and I’m having an increase in vestibular migraines. Finally, I can see that I get a lot more done than I thought I did, and by paying attention to what I’m doing encourages me to do even more. I may not continue to write these journal entries publicly, (let’s face it, who really wants to read my day to day activites?) but I think I will continue to keep a private journal, I can really see how useful it can be.

More thoughts about my migraines I’ve noticed over the past month or so I wake up with relatively no pain, this has changed since starting Emgality, I used to wake up with a migraine almost every day; however, within a couple of hours a migraine will normally start. There were a few days last month that this didn’t happen, but for the most part, I could set my watch to it. This past week I’ve had 3 vestibular migraines, (a vestibular migraine causes dizziness and vertigo with or without pain) each one has been accompanied with severe pain and confusion. These are not new, but they do seem to be coming more often, and are more intense. Things to talk about with my doctor.

Cactus Flowering Tucson, AZ W. Holcombe

Yesterday I finally spent some time outside. I have 3 types of exercises from my new therapist, breathing, hip stability, and functional. While I was outside I laid down by the pool and focused on my breathing exercises. It was so nice, I finally felt things said I should feel! Exciting! I got all of my exercises done, not all at once, but I got them all done. So, I didn’t get a whole heck of a lot done yesterday, but I accomplished exactly what I wanted to, I went outside, and I did my exercises. The rest of the day I didn’t feel well and didn’t feel like doing much of anything, then right before I fell asleep I had a migraine hit that was excruciating. I thought a cluster was starting it was so intense, but it didn’t quite hit that magnitude. However, the pain was behind my eye and in my temple, my eye watered and right nostril ran, just like when I have a cluster. I had to move because the pain was so intense. So, I’m not positive it was not a cluster, but if it was, it wasn’t quite as painful as ones I’ve had in the past; not to say this was not severely painful. (for me a cluster is the greatest pain I can imagine, the pain I had last night would have sent me to the ER if it had lasted longer, but it was not the worst pain imaginable.)

Quick rundown of today. I ate breakfast outside. I took a bath and washed my hair. (this is a big task for me) I had a dentist appointment (check up, cleaning, fixed a small chip in a filling, and a fluoride treatment), went to Trader Joe’s, had dinner at the table with my husband, made “brownies” (hopefully I’ll sleep better tonight), and watched old Dr. Who’s for a bit. I did have a migraine that started shortly after breakfast but it didn’t get above a 6 all day so I was able to function. I used my functional exercises while making brownies and my back hurt less, but it did start to hurt more after I finished. I’m just thrilled I was able to get them all mixed up and in the pan without being in intense pain. Today was a FULL DAY! Tomorrow is an early day, so I’m going to bed.

Short day

The day started out okay. I could have slept longer but Kiki decided it was time to play, and who can argue with that face?

Kiki

It was a normal morning, I had my breakfast, took my meds and thought about what I could accomplish today. I only had 3 things I wanted to get done 1- spend some time outside, 2- fill out insurance information for cochlear implant replacement, 3- do my new exercises.

Out of the 3 the exercises were the most important, so I decided to do that first. Then I looked down at the floor and thought, “There is no way I’m getting on that dirty carpet and have my allergies go crazy again, I’ll vacuum it first.” So, I picked up everything on the floor, moved things around, pulled out the vacuum and vacuumed our small living room. It was going well, then right before I finished I had a shooting pain through my head, the room spun and got dark, I had a hot flush, got nauseous, and had to sit down fast. Another vestibular migraine.

The pain lessened in intensity in a relatively short period of time, but I’ve had continuous other symptoms throughout the day. I feel awful and can’t trust my balance at all, so I basically spent the day curled up in my chair watching Netflix (I saw a talk by Brene’ Brown and an episode of Queer Eye) then I watched cooking shows (which made me want to bake bread and make my own crackers.) Have I mentioned I’m obsessed with The Great British Bake Off? I watch it over and over, can’t wait for a new season to come to the US. Oh, it’s called The Great British Baking Show in the US if anyone is interested.

Now I’m off to bed, having only accomplished, let’s see, nothing on my list for today; and that’s perfectly okay. I got the living room vacuumed!

I do believe the new antidepressant must be working, 2 weeks ago having a day like today would have made me feel worthless, useless, and filled with dread. Today I can take it for what it is, life at this moment. Nothing more, nothing less. I guess it was a good day after all.

Weekend Warrior

One of the last of the wildflowers 2019 Tucson – W Holcombe

I missed writing yesterday, it was such a full day I just didn’t get it in.

Before my painting class with my niece I decided to take a Maxalt, and a couple of toradol with a little caffeine to see if I could get this migraine to a level where I could not only be present for the day, but also enjoy it a little. The pain did get to a more tolerable level, and after an hour I took the 2nd dose of Maxalt (if the pain doesn’t subside with a first dose you are supposed to take a second, I normally don’t because I don’t want to run out of my medication too soon, but on special days I will), after the second dose the pain was reduced more! Yay. The class was fun. I was sad because I cannot understand most of what my niece says, she speaks very quietly most of the time and does not move her mouth much at all. I’d love to be the aunt she could whisper too and tell secrets, but I can’t hear most of what she says. It makes me so sad. It did bother me that I did not get a thank you at the end of the day, I wasn’t surprised, that saddens me too. I do think she had a good time, though.

After our painting class we went out for pizza with the family. It’s always a mixture of emotions when I spend time with Stuart’s family. I like the feeling of family, but it can be a bit too much for me all at one time, and Stuart’s sister is very boisterous. I can only take her in small doses. We had to go back over to their house for some things after lunch so my time with her was close to hitting it’s limit before we left, and I was starting to have more pain.

When we left I was still feeling pretty good though and decided I did not want to waste it. I knew I might be pushing it a bit too much, but it’s a good chance that the next day could bring increased pain no matter what I do, so when I’m able, I’m taking advantage of it. I found out about this little clothing store that carries a style of clothing that I like so we went to check it out. Funny thing, I got 2 dresses, and neither one of them are in the style that I went there looking for. ha!

After that we were both bushed, but we wanted a treat so we got frozen yogurt before we went home and spent the evening watching baking shows and old Dr. Who’s.

Today I woke up feeling pretty good. Ate breakfast, picked up a few things around the house, then set out in the backyard to poopy scoop, something I haven’t done in a very long time and I’ve been feeling very guilty about it. I walked out and saw that the little rake and pan that I use to do it had been moved. “Oh no, my landlord felt the need to pick up my dog’s poop!” I felt so ashamed. I told Stuart and he said he wouldn’t feel bad if someone did that he’d just thank them. Ugh! I thought well no wonder stuff just accumulates on the porch and things are not put away….he feels no shame about things. Our back porch looks awful, he should be ashamed. So I told him so! Then I went out there and cleaned up the back porch! I moved and rearranged plastic totes (they are empty), I swept down the cob webs, I swept off all the totes and pool floats, I swept the porch (boy was there a lot of little mesquite leaves on there!), I wiped down the grill, and I got Stuart to get rid of the 2 cardboard boxed that were back there. Now my back porch looks all clean and organized, and we look like we take pride in our home. I am absolutely amazed at how much I can do when I’m mad! The amazing thing is, I could sweep like that and it didn’t hurt my back much at all, but have me stand at the kitchen counter and try to bake or cut up veggies and it hurts so bad it brings me to my knees.
(Yes, I know the whole thing about feeling shame sounded snarky, I felt snarky at the time. I shouldn’t have gotten mad. I know a lot of my anger actually came from feeling that I can’t do my share to help keep up the house and the yard. Stuart and I talked about it, and he says he understands, I think he does, and I still think he needs to feel a little shame now and then. lol)

After all that adrenaline flew out of my body I fell into a heap in my chair and crashed. Then after about an hour I started seeing the world vibrating and going dim, I suddenly felt high but I hadn’t done anything to cause it, then the pain hit; a vestibular migraine had started. It wasn’t quite lunch time when I curled up ready for the end of the day.

I had a very full weekend, I got a lot of things done and had some fun, now for some sleep.

Journal Day 2 – Yoga Therapy

It has been a very long day and I thought about not writing today, but the main reason I decided to post these journal entries here instead of writing them in a personal journal was to keep me accountable and keep me motivated, so here goes it.

Firs Saguaro bloom I saw this year.

My 3 day migraine broke about 10pm last night, so I was able to sleep well until 5am when I woke feeling a bit off and went to the bathroom when suddenly vertigo hit and so did the pain in my head. I had a vestibular migraine, with migraine associated vertigo. I’m not sure how long the vertigo lasted. I took my medication, and used medical marijuana to stop the vomiting and waited it out until I could go back to sleep. Stuart stayed with me and then worked from home to make sure I was okay. When I got up at 10am I no longer felt the effects of the vertigo, but the migraine was more intense. I ate breakfast hoping it would improve before my 1pm appointment, but by noon I decided I needed to take something. It took the edge off just enough that I was able to get through my appointment.

Now, about that appointment! I’ve been in physical therapy for my back and it simply hasn’t been helping so I decided to try something else. Someone recommended a woman who is a physical therapist who teaches therapeutic yoga. I’m working one on one with her. The first visit was very interesting. She showed me lots of photos of how muscles work together and we talked about how if certain muscles in one part of the body are not strong then other parts of the body will suffer. My hips and pelvic area are weak. She said that often when those muscles are weak it will cause pain in the back, especially when standing for a while, like mine does. She gave me some very simple exercises to focus on over the next couple of weeks then I go back in. I don’t know if this will help my back or not, but I know my whole pelvic area needs to be stronger so I’m going to work really hard on this. I’m really proud of myself for going to this appointment after waking with vertigo this morning, often that would cause me to be too afraid to do anything for the rest of the day. I was more off balance than normal, but I was determined, and since Stuart was able to take me I felt safe.

After that appointment we went and picked up my new glasses. I got new glasses a couple of weeks ago, but they made the lenses wrong. They had the focal point in the wrong spot so my progressives were not working at all. Now they are all fixed and I can see the computer. I’m not positive I like these new frames, it will take me a while to get used to them. They are SO different from my old ones. I went from dark bold statement frames to clear light weight frames. What a difference. I would post a picture, but I’m in bed. lol

We then went to Walgreens to pick up some prescriptions of mine and get some things straight they have messed up and I had a bit of a melt down. They really have messed up a few of my prescriptions, calling doctors for refills who I don’t see anymore, filling things I don’t need, prescriptions not showing up on line so I can manage them….So I had a list of things that needed to be discussed fixed, but I couldn’t hear anything in there so Stuart had to do the talking. I was trying so hard to follow what was being said, and he would ask me something and I’d try to answer and then I felt like he just dismissed me and half the things on my list were not addressed and it was just a mess. I ended up in tears and went to sit in the car. There has to be a better way for me to communicate the things I need.

I looked back at the situation and when we walked up there it was so noisy I got so overwhelmed told Stuart that I couldn’t hear so he would need to handle it for me. Right there, I gave up my control in the situation, but then I got upset when I felt like he “dismissed” me. When I started to feel like things were not being handled the way I wanted them to be, I should have spoken up and said something. Even though I couldn’t hear well enough, I should have made them slow down and help me understand, even it that meant they had to write it down. This is my healthcare, I need to be more assertive and stop being so afraid.

There’s something else I need to also look at with this situation though, I had a migraine. The pain had increased to a 7, it was harder to concentrate and focus, my vision was slightly blurred from the florescent lights and the right side of my face was tingling. I honestly don’t know if I would have spoken up if I had been migraine free, but I do think I need understand that migraine changes how you deal with life, and I need to give myself a break sometimes.

Unsteadily Unstable

For the past month or so I’ve been filled with an inner rage and desperation that has been screaming for help.  I was hearing all the anger, fear, and sadness, but I couldn’t hear the call for help.  This week I finally heard it.  I finally understand that I haven’t been just reacting poorly to the stress in my life, or having mood swings because of a hormones, no, I’ve been having a bipolar episode.  I still know my moods aren’t where they should be, but it’s better than it was, and I will be seeing my doctor about it very soon.

I have so many things I want to say, I don’t know where to start.  hmmmm.

I have been reading about bipolar symptoms, specifically rage, and saw many things that are too familiar.  The rage can be set off by the smallest of things, often something I would never even consider getting mad about on a normal day.  The anger starts and builds quickly to a full blown rage!  After all the screaming and throwing things, and who knows what else, is over I feel better for about 2 minutes then I suddenly think, “Oh my god, What have I just done?”  Bipolar rage if often associated with mania,  but can also manifest during depression.  For me if the rage is from a manic episode I blow up fast and furious, but it burns out as quick as it started, leaving only the guilt and hurt behind.  When the rage comes during a depression episode I will have a huge blow up and it will go down, but he anger is still there, and I will blow up again, or I just stay angry for a long time.  The rage inside wanting to break through the surface.  So rage during mania is like a short burst, the rage during depression is a short burst followed by underlying anger and possibly another burst or two.  Both can cause everlasting damage, but the later is much harder for me to deal with.  When the anger doesn’t just go away after a rage episode I start to think it’s not caused by my mood disorder I’m just a bitch, and I start getting angry at myself.  So much anger, that is so hard for me.  I’m not normally an angry person.

Sometimes I will get angry about something, but I don’t let it get to me, just slough it off – at least I thought I did.  Often when the rage hits it’s after I’ve had a few things happen that have caused me to get mad, but I didn’t feel like it was a big deal, I thought I was just letting it go.  It seems to me that it will often be a little thing that sets it off, but it’s like the last straw kind of thing, all those little things I have gotten mad about suddenly rise to the surface and that one little event that made me blow up was fueled by all those other small flames.

Rage can damage even the closest relationships.  It can cause trouble at work, with your family, friends, authorities….rage can really mess up your life.  I’m so very lucky that my husband understands that my rage may seem focused on him, but it really has nothing to do with him.  Sometimes it does spark conversations and we fix all those little things that built up, but honestly the rage is never deserved. Even though he knows all this, it is still very, very hard on him.  When I get to the breaking point I often leave.  I will pack a bag and set off.  I have no idea where I’m going, and I just get madder because I feel I have no where to go.  When I leave like that it hurts and scares Stuart so much.  During this last episode I made him cry.  My husband does not cry often.

I was mostly stable for over 20 years, but over the last few years I’ve had more than one break through episode.  I’ve needed to change medications too many times.  I’m afraid we are going to get to the point where nothing works.  In addition to Bipolar I disorder, I also have generalized anxiety disorder.  Trying to find medications that treat both and I can tolerate has been a challenge.  I’m hoping the gene test I did will help with that.  I can  definitely say, that the new medication she put me on is not working, we have to find something else.

For over a month now I’ve been dealing with severe anger mixed with depression and anxiety.  I have also been getting tickled over the stupidest stuff and laugh until it hurts, but that doesn’t last long and I return to the negative moods quickly.

I think the rage has also been triggered by the return of my vertigo.  I’m back to having attacks multiple times a day.  I do think many of them are caused by migraine instead of Meniere’s because with some attacks I’ve been having aura right before it starts.  The fear has been real.  Not just the fear that it is coming back, I’m actually starting to accept that I am having a relapse, but I know the is a possibility for a remission.  However, I fear for my safety.  I’ve fallen 3 times in the past 2 weeks.  I’m back to using my walker in the house and sometimes when we go out.  (often when we go out I can use a shopping cart, or Stuart’s arm to steady me enough that I can get by for a bit)  For the most part I’ve been confined to the house, without the ability to do much of anything except watch TV.  I did sit outside once this week, but I had vertigo outside without anyone home, I had a very difficult time getting back inside.  I don’t think I’ll be going outside when I’m home alone any time soon.  I did ask my landlord yesterday if he would be a backup for me if I fell and needed someone and Stuart couldn’t get home, gratefully he said he would.  Of course, he also might not be available, but I’m relieved to know there is someone can call if I need it.

I think that’s enough for today.

I’ll leave you with a few photos I took yesterday of the flowers around my yard.  I miss seeing the leaves change colors, but I’m seeing a different beauty in the desert.  (most of these are Lantanas, technically a weed from Mexico.  It is very pretty and drought resistant. You will find them all over the area.  I’m thrilled to see this gorgeous native plant almost everywhere I go)