Decisions

Image by Jan Alexander from Pixabay

It seems like I often stay away from here more than I intend to. I will come here and sit and think of a hundred things to write and feel like none of them are worth actually putting into words. I have some ideas for posts I want to write about that I think are interesting, but I just can’t get those out right now. Things just aren’t settled enough in me to get the words out right, I’m too self absorbed, I guess, to sit down and write about anything intellectual. So for now, if you will hang in there with me, you are going to hear more about me.

I made a huge decision this weekend, I’m backing off on some treatments. Yep, you heard right, I’m so tired of it all I’m taking a break. This is simply taking way too much out of me. More importantly, it’s taking way too much out of Stuart. He isn’t complaining, but I see it. I have at least 1 appointment a week, normally 2, often more. He has to leave work early at least one of those days. If I have an appointment at the pain management doctor he has to take half a day off because it’s an hour away. He also has to do most of the dishes, the laundry….he’s really an amazing man. Luckily we found a housekeeper and she will be coming in starting next Monday once a month to do the major cleaning. We still haven’t finished getting all our moving in stuff straight and we have been here 2 months. I simply cannot do it. We are both so overwhelmed it’s crazy. He’s being made to feel like he’s having to choose between me and work. That’s going to make him hate his job real quick, he’s already talking about looking for another one. I’m freaking out about that. He has to feel better about things. I have to take some of this off of him and the only way I can do that is to remove some of the responsibility from him. Getting rides to doctor’s appointments is not a solution. I cannot hear well enough in the appointment to handle it alone, he has to be there to help me answer questions, and to help me understand what the doctor says. He also needs to be there in case I crash. I often have vertigo attacks due to the stress that comes with these appointments, I would need someone there knows how to deal with that.

I’ve canceled all the pain management appointments, I’ll consider going to another clinic if I can find one closer to us that has appointments at times that won’t take Stuart away from work so much. I do admit I’m having more migraines this month since the occipital block wore off, but it’s not worth the stress of going an hour in one direction to their office. It’s a hard trip, and I don’t really like the doctor. I see my psychiatrist next week, we are normally able to get a late afternoon appointment with her, so Stuart doesn’t miss work, but if I get approved for the Ketamine I’m not sure if I’d have to go in earlier, so that would have to be part of that decision now. I’m changing my primary care physician to a doctor that is very close to me, so I it will be very easy to get there. I don’t think I need to go to a kidney doctor any more, so I’m canceling that. I will keep seeing my migraine doctor, I don’t see her but every 3 months, so it’s not that bad. And if Stuart can’t go, my neighbor said she would take me. I know I can hear her, and I think she will listen to me. A lot of doctors don’t listen without Stuart backing me up, there is definitely a prejudice against women in the medical industry, we have really noticed a marked difference in how doctors treat me when I’m alone and how they treat me when Stuart is there to back up what I’m saying.

There has just been so much going on and I just can’t see where there has been that much improvement. Yes, I do see some improvement, but when you are doing so many things how can you know which one is the one working? I started the Aimovig 4 months ago, they say it takes about 3 months before you can judge if it’s working, well that was the same month I got the occipital block, so I don’t know if the shot or the block was the one working. I think it’s a wise idea to find out which one is helping before I keep spending money on both. I’m also not fond of the idea of continually putting steroids into my body after having avascular necrosis. They told me that it was most likely caused by steroid use and that it’s possible to get it in other joints; I don’t want any other bones to die, having one hip replacement is enough. However, if the occipital block is the one that worked then they can cauterize the nerve and that could last a couple of years. But they want to do an occipital block on the other side first and then they plan on doing injections in my back to help the muscles that won’t stop firing….that’s a lot of steroid injections. I think seeing another pain specialist to get another opinion might be a good idea anyway. I think my back might need some myofascial release. I found a pain clinic that does that kind of thing too, they are only 30 mins away, well at least I’m getting closer…sigh. First I’m taking at least a month off from that kind of stuff. Next I’m going through my medications and deciding which meds I know are working and which ones I’m taking because I think they may be doing something and I’ve been afraid to stop just in case. I’m tired of taking things that I’m not positive are helping. Lots of decisions to be made.

I do have some exciting things I’ve been doing and coming up, including a chronic pain group I’ve been attending and a migraine retreat I’m going to in April, I’ll write about those soon, I promise, but this is getting long. So I’m going to close and get this posted before I decide it isn’t worth posting and scrap it.

Have any of you decided to just take a break from some treatments? I’d love to hear your experience.

Why Am I So Sad?

*Warning, this post may be a trigger for some people. It mentions major depression and passive suicide ideation.

self

I’m sitting here with a severe migraine and I’m certain that’s why I simply want to die, but why do I feel that way so much on other days? Let’s face it, my life is going better than it has in a long time. Yes, I’m having a really bad migraine right now, it isn’t as bad as it was last night or I wouldn’t be able to type this, but it’s still pretty dang severe. However, my migraines are much better overall. I’ve had 5 migraine free days this month! That’s enough for me to be dancing in the streets! I haven’t had a month with 5 migraine free days in….Oh, I don’t know how long! I have a house of my dreams, an amazing husband, wonderful neighbors….So why am I so sad? Why do I sit here and question if I should actually exist? How can life be so much better, and yet I feel so bad so much of the time? I have this urge to just run and run and run. I have this compulsion to pack a bag and leave. Where would I go? Why do I think that would make anything better? In reality I know it wouldn’t, after all, I’m trying to get away from myself and no matter where I go, there I am. I simply do not want to exist.

So these are these are the things I asked my psychiatrist last week, why am I still so sad? Why do I feel no better when everything in my life is going so well? She said, “It’s not what’s on the outside that’s bothering you, it’s your brain chemistry that’s out of balance.” Yeah, I knew this, really I did, but I’ve never had it this bad with everything going so well, and that’s a bit too simplistic for me. So I came home and started reading, I wanted to know more about this “brain chemistry” of mine. I found this article in Harvard Health that explains things really well in language I understood, and I thought some of you might find it really interesting too. What Causes Depression? Onset of depression more complex than a brain chemical imbalance.

More about me….We are still working on getting the ketamine approved. It seems as if it might actually be happening soon, or at least we will be getting a definite yes, or no from the insurance company, instead of this extremely long hold up that both me and my doctor are extremely frustrated over. If they come back with a “No”, I don’t know what the next step will be.

I’m doing everything I’m supposed to to try to be better. I’m eating well (most of the time), writing a gratitude journal every night, writing affirmations every morning, I’m trying to move more, I’m meeting new people, making friends…..All of this is very hard for me. I’m pushing myself beyond all my comfort zones and I’m still doing it, I’m trying so very hard to get better. At least when I’m focusing on those things I don’t have time to think about other things, but then I have days like today when all I can do is sit here because it hurts so bad and I think, “what’s the point?” I was supposed to go to coffee with my neighbors this morning, and I had to get Stuart to cancel for me because I couldn’t lift my head off the pillow it hurt so much. That’s a great way to make an impression, huh? I’m so tired. I’m just so tired of trying so hard, it just shouldn’t be so hard.

I know it isn’t always this hard.

I know it can get better.

I know it will get better.

I KNOW I WILL GET BETTER.

“Sometimes even to live is an act of courage.” ~Seneca

When I Can’t Take Abortive Migraine Medication

Image by Seksak Kerdkanno from Pixabay

I have chronic migraines. You are defined as having chronic migraines when you have more than 14 migraines a month, I have more than 20. In the last month I’ve had 2 migraine free days. Due to the risk of Medication Overuse Headaches (you can read more about MOH here), and the possibility of some nasty side effects, you are only allowed to take abortive medications twice a week or a maximum of 10 per month. Abortive (also referred to as acute or rescue) medications are medications you take at the time of the migraine to stop it, they are best used at the first signs of a migraine. Abortive medications are analgesics (such as NSAIDS, Excedrin Migraine…), triptans, ergotamines, and on rare occasions opioids.

This week has been a rough one, I’ve had some intense migraines and I’d already used my abortive medications for the week. What’s a girl to do?

Suffer? Yeah, maybe, but I have found a few things that do help a little and sometimes they even get me back to my smiling self. 🙂 Like most migraine treatments these work best if you use them early, when the pain gets really bad, it takes much more to get it under control. (so it’s really hard when you wake up with a whopper) Here’s a little list of things I’ve been using that seem to help me, just keep in mind that everyone is different these might not work for you, or, who knows, they might work better for you than they do for me.

  • caffeine – one of the first things I reach for now is caffeine. I don’t use a lot, but I am using more than I used to. I always keep my consumption under 200mg a day (going over can cause rebound headaches so you have to be careful about this treatment), but when I have a migraine a little jolt of caffeine can help. I normally take it in conjunction with other things. (my usual dosage is about 41 mg in a 16oz drink)
  • ginger – Ginger has been shown to help stop a migraine. There have been a few studies showing how ginger helps with migraines, the one that impressed me the most was one that was held in an ER, the patients that came in with migraines were either given an NSAID with ginger or the NSAID alone and the group that were given ginger were more likely to find relief across the board. There is also a study that showed that ginger was as effective as sumatriptan (Imatrex) for some people. I’m not one of those people, but I do think it helps. So I take 500 mg of ginger now at the first sign of a migraine. Here are some links to studies about ginger Ginger and migraine treatment, Ginger efficacy compared to sumatriptan, Feverfew and ginger for migraine.
  • I decided to try a homeopathic remedy, I honestly didn’t think it would do anything, but it didn’t cost much so I thought I’d give it a go. Much to my surprise, it helps. It’s not a miracle, it rarely takes it all away, but it often lessens it enough that I can function. (I think it’s worth noting that I’ve never taken this without either caffeine or ginger) It’s called Hyland’s Migraine Headache Relief. It contains Glonoinum, Belladonna, Gelsemium, Nux Vomica, Iris Versiolor, and Sanguinaria Canadensis. I found it at Sprouts, but when I did an online search it looks like you can find it all over. The dosage is 1 or 2 tablets every 4 hours. You let them dissolve on your tongue, I like this a lot. If I happen to not have water I can still take this, and it doesn’t taste nasty. I always start with 2, and in 4 hours if I need more I then decide if I need 1 or 2 at that dose. I have noticed no side effects from this so far. I bought this product with my own money, I am not receiving anything from the company, they know nothing of me, this is not an official review or anything like that.) undefined
  • medical marijuana – I’m going to write a post about this soon, probably the next post I put out, but I thought I’d put a little blurb here that I do use medical marijuana to help with my migraines. It is not a miracle, but it does help. However, it is a lot of trial and error to find what works for you.
  • ice or heat – my head is variable, it sometimes feels relief from an ice pack, sometimes from heat, so I try both. Sometimes I’m afraid to try either for fear of making it worse. But normally I’ll try ice if my pain is mainly on the top of my head, if my neck is the main culprit I’ll use heat, if my forehead is where the pain originates I kind of leave it. I have an IceKap, I have found it works well when my head wants ice, but it’s heavy and my neck doesn’t like that so I don’t use it much. However, if you are someone who needs ice for your migraine, this cap is great for getting your head cold and it stays in place. It presses on my glasses though, I don’t like that, I don’t like to take my glasses off when I have a migraine because of the vertigo. (again, I bought the IceKap, no one knows I’m saying anything about it. I’m not getting anything.)
  • Epsom Salt Bath – I can’t do this all the time because of vertigo and other times when I’m hurting too much I just can’t get in the tub, but when I have a moderate headache a nice soak in a tub with Epsom Salts can really help. Add the scent of lavender or mint and it can really be relaxing, and I normally hate scents, but I really liked the lavender Epsom salts I tried recently. It wasn’t a fake smell, or too over powering. It was very relaxing. That’s a good thing.
  • That’s about it from me, other people really like essential oils, but for the most part scents trigger migraines for me, none have relieved them. I do find peppermint a little helpful sometimes, but other times it makes me nauseous, so I don’t like to risk it. Lemon is about the only smell that never makes me sick. Oh…Sometimes if I eat something spicy it will lessen the pain in my head for little while, but it doesn’t last. If you can trigger an ice cream headache, it’s supposed to stop a migraine, but dang! That’s something I don’t really want to try. Oh who am I kidding, I have tried, you know it’s hard to trigger one of those when you are trying to do it. I still can’t tell you if it works, and when I think about it I really don’t want to cause myself that much pain.
  • Note that I didn’t include things like massage, acupuncture…. because I consider those more preventative and today I’m focusing on abortive treatments. Also I’m focusing on things I can do for myself without help.

How do you treat your migraines when you can’t take your meds,?

Did I share anything that you found interesting?

How has your week been? I’m thrilled to say today I don’t have a migraine! The exact opposite of every other day this week. Yay.

May we all have a pleasant weekend. We are finally getting the rest of our furniture this weekend. Woot, Woot!

Ready for 2020?!

Image by Gerd Altmann from Pixabay

I’m baaaack! Whew, I didn’t mean to be gone so long. I actually did write a post during my absence, but, silly me, I forgot to hit “Publish” and it’s out of date now.

Let’s see what was going on when last I left you?

We were getting ready to move into our house. Check, that happened; there are still plenty of boxes and there is actually more to move from Stuart’s dad’s house, but we are in OUR house and it feels good, even if I’m extremely exhausted and flaring.

I had hopes that the nerve block injection I had in my neck was working, but it didn’t. I had a couple of good days, but I think that may have just been good days because it sure didn’t last. I saw the pain doctor again and I had an occipital nerve block on the right side on December 30th to hopefully help with my migraines. I actually do think this one is working. I have had migraines since the injection, but they did not start in that area. That’s great, because a LOT of my migraines do start in that area. It hasn’t been long, but so far I’m hopeful. I also had an x-ray of the thoracic region of my back and it showed no damage; I have to say I was surprised. I have so much pain in that area, and it feels like it comes from the bone. I’m happy I don’t have problems there, but I do wish I knew what the heck is wrong. It’s really hard when you can’t have an MRI. She also wants me to have a nerve conduction study to see what may be causing my arms to go to sleep since the nerve block in my neck didn’t help. I’m not looking forward to that test, it’s not very comfortable (to say the least), but hopefully it will provide some answers.

Right after my last post I had a severe gastritis attack accompanied by severe diarrhea (literally crapping my pants over and over. yes, I know, TMI). I had my yearly physical right after that and my doctor thinks I may also have diverticulitis. I’ve been referred to a gastroenterologist, but haven’t heard from them yet. The day of our move I woke to the all too familiar feeling of gnawing pain in my stomach, luckily it didn’t escalate to a severe gastritis attack, but it was a very uncomfortable day.

I can’t say much about the holidays because it is just a blur. I know they happened because of all the decorations in stores and specials on TV, but boy oh boy we sure didn’t have time to celebrate anything.

So now I am ready to say goodbye to 2019, and face 2020 with renewed hope and wonder. I plan to take each day as it comes, have more fun, and take things less seriously. I’m not going to make up a bunch of resolutions I probably won’t be able to keep, but I do want to face this year feeling a bit renewed. After all, I just moved into a new house, my life is drastically changing. I’m going to be changing places I normally do my shopping and even some doctors…because we now live on the other side of town. So much is changing, there is no need for me to make resolutions, things are just going to change naturally. However, I do plan to make some short term changes throughout the year. There are some things I want to try so I plan on doing some 30 day challenges for myself, perhaps some of them will last longer, I’m sure some won’t last the whole 30 days. For example, for 30 days I want to eat vegetarian, to meditate daily, to journal daily, to draw daily, to not eat out, to not buy anything new except food… Well that’s 6 months right there! I’m not going to be hard on myself if I can’t keep to these things, but I feel like if I put a short time frame on it then I can just try it out and see if it’s for me, who knows it may be something I just love and will keep doing forever, or it may be something I hate and quit in a week, no pressure.

I think that’s enough to get things updated and to get me writing again. It has been one crazy busy month! Not only have we been moving, during the holidays, I had 1-3 doctor’s appointments each week. It’s time to slow down and get this year started.

Happy New Year everyone! May this year be filled with love and happiness for you all.

Ending a Horrible Year the Best Way

Image from pexels

I’m still pinching myself, I just can’t believe how much has changed recently, and all for the better. Wow…just Wow.

Our new home

I’ll start with the best news first, we close on our house on the 19th and we move in on the 20th! Yes, we will be in our new home before Christmas! I’m so excited I could squeal! and I probably have! hahaha We found the cutest house in the nicest neighborhood, I just adore it. It’s not exactly what we were looking for, but I just fell in love as soon as we walked inside. The neighborhood is focused on sustainability. The houses are all energy efficient, the neighborhood has a lot of walking and bike trails, it has it’s own coffee shop, and a few other little shops. It has the greenest school in the country that also ranks very high academically. It’s beautiful. The house has enough room for us and Dad, without being too big, and it has a little casita (a detached guest suite) in the back that’s going to be my studio. And I’m going to plant a lemon tree right outside my kitchen window. Perfect.

I’m able to enjoy all of that because my antidepressant is working better. I still haven’t gotten the approval for the ketamine, but we increased the dose of the Fetzima and it is helping more, I still feel like I have this black cloud over me, but it isn’t dropping buckets of rain and hail on me all the time. I can see the sun, maybe even a rainbow.

I’ve also had a few migraine free days. Yes! I really said that! The days aren’t consecutive, but I have had one here and there. I normally do not wake up with a migraine now, I get them in the afternoon usually. I’m not having as many severe migraines. They are normally moderate in intensity, when they are severe the severe stage doesn’t last as long. For example, I might have a migraine that last 9 hours, 2 of them will be severe. I did have a severe day one day this week, so it still happens, just not like it was. It looks like the Aimovig is doing something. Yay!!

The nerve block I got in my neck started helping, not completely, but I have been waking up most days without my arm being asleep or aching terribly. Every once in a while it will happen, but most of the time nope, it’s good. My follow up appointment was rescheduled because my doctor was sick, so I don’t know what the next plan is, I’ll find that out soon.

I had planned to post much more often but I’ve been so busy with all of the house stuff, doctor appointments, holiday stuff….I am so busy! I will try to post more soon, but I can’t promise anything, the next few weeks are going to be crazy busy! I have a lot of post written in my head, I just need to type them up.

Not everything in my life is perfect, but I’m feeling so much better I can’t think of a better way to close out a really crappy year and start 2020.

A Midi-Me Update – Injections, Psych meds, Houses…Stress

Photo by Thomas Plets on Pexels.com

A little bit of a catch-up as to what’s going on in my little corner of the world, besides, if I don’t write it down, how will I ever remember?

I got the results from the x-rays of my neck, it basically says I have Degenerative cervical spondylosis (often referred to as degenerative arthritis) with narrowing of C5-C6, retrolisthesis (the posterior or backward slippage of a vertebra) of C5 on C6, and bilateral neural foraminal encroachment (spinal nerve root is compressed on both sides) at this same level more extensive on the left.

I went in on Monday and got my injection. They did the injection between C7 and T1, a little to the right, because my right arm is the one that bothers me the most. When the nurse took me back to the procedure room I told her how nervous I was because of my hearing loss and Stuart couldn’t be back there. Since losing my hearing it’s very hard to have procedures BEHIND me without Stuart there to help me. She reassured me over and over that they would take good care of me. I had her tell me everything they would be doing, and I felt a bit more at ease. The doctor came in, this is the first time I met him, I only saw his assistant before, he asked if I could hear him at all and I tole him Yes, but after I lie down and he is behind me it will be garbled and I will have a very hard time. He seemed to understand. Obviously he didn’t, because it was horrible. He talked with his assistant the entire time, it sounded like just chit-chat but I can’t be sure because I couldn’t understand anything that was being said. I had no idea when he spoke to me. I didn’t know when he was going to stick me, nothing. I was terrified he was telling me to be very still or to move or something and I was not able to understand. When it was over I didn’t even know. I was confused if it was time for me to get up. When I sat up the nurse was there and asked if I was alright and I said, “I do not feel taken care of” and I burst into tears. I explained what happened and she said how sorry she was and that it should not have happened that way. I got myself together and went back to my room to get my IV out and leave. The doctor came out and made sure to catch me before I left and apologized. He was very nice and told me that he talks because it calms him, he was very sorry and it will never happen again. We will make sure we have a better way to communicate. I left feeling much better, and I was proud of myself for speaking up. In the past I would have held it in and gotten out of there as fast as I could and simply not gone back. Now they were educated and I had a much better experience.

Unfortunately, the shot hasn’t worked. I’ve seen no evidence of any change. We will have to try something else. I go back the day before Thanksgiving for a follow up, we’ll discuss the next steps then.

Now for an update on the psych side of things. I still haven’t gotten approval from my insurance company for the ketamine. They came back saying I needed to try TMS (Transcranial Magnetic Stimulation) first, so my doctor’s office had to send back explaining that I can’t do that because of my cochlear implants. Of course, it takes the insurance company forever to come back with an answer. Geez. On the up side though, the new antidepressant she put me on, Fetzima, is doing some good. I’m not back to my normal self, but I’m not feeling like I’m in the deepest darkest depths of despair either. I saw my psychiatrist on Wednesday and we increased the dosage, I’m hoping it will bring me up a bit more. She told me to watch out for side effects, as it can cause headaches. I asked her, “How would I know?” I was being kind of serious, like, would they be different than this constant thing I have now? or what? But she said, “I guess you wouldn’t.” Well damn. Now how do I know if my migraine is actually getting better but this drug is causing me to have a headache?

We have been constantly looking for houses, trying our best to find just the right house for us before our lease is up. We can move into Stuart’s father’s house, but that means we’ll need to move twice. We thought about renovating the family home, but we don’t really want to live there forever, so we are still searching for a place to call our own. Crossing fingers and toes that a house we saw this week will turn out to be the one. We might just have a very magical Christmas.

Speaking of holidays, is there anything more stressful than trying to organize a holiday meal with people won’t tell you what they will and will not eat until you tell them what you are making and then they just say, “Oh I can’t eat that”, or “The kids won’t eat that”? Ugh! I used to really want to have a family holiday, but boy oh boy is it a pain in the butt. They can’t afford to do much, so we thought we’d do everything, but I couldn’t get anyone to tell me what they would eat. I swear you just can’t please some people. So they are bringing food too, we will have way too much food for 7 people, about half of it, I can’t eat. When we lived in NC we used to have an “orphans” Thanksgiving. We’d have a big meal with a bunch of people who had no where to go for the holiday. It was always so much fun. We’d often play games after dinner and talk for hours. I don’t know anyone like that here, of course, I don’t know many people here.

To make things much less stressful for Thanksgiving I ordered our meal from Wholefoods. I’m adding another vegetable, a desert, and some cookies. That’s all the cooking I’m going to do, and I love baking, so that’s not stressful. I also make my cookies in batches, I simply freeze the dough and cook it later. Also, if I can’t do it, it’s not a big deal, the meal is taken care of, and the other half of the family is bringing a pie, so everything is covered. I find, the trick to surviving the holidays when you are chronically ill is to have all your bases covered in case you can’t do the things you want to get done. Don’t over extend yourself. Rest often and don’t eat too much junk. Try to keep your normal schedule if you can. You might want to increase some of your supplements. I increase my vitamin C, D, and Zinc during the winter.

How do you survive the holidays? Any tips you want to share?

My Brain Screams

manipulated detail photo of saguaro catus by wendy holcombe

For over a year now I’ve been hit with one thing after another. Last Fall my bipolar medication stopped working and I basically had a psychotic break with the mania/rage going way out of control and battling a lot of medication side effects before we finally got that under control. Then I had a severe UTI that caused hydronephrosis in both kidneys, I had a cyst removed from my scalp that got horribly infected and I had a reaction to the antibiotics. In April the severe intractable migraine started and has continually gotten worse; over the last couple of months I’ve been having an escalation of cluster headaches, at least one a week. and now my antidepressants have stopped working. All this while we have been looking for a house, in the worse housing market I have ever seen, and we have to move from our rental by the end of November.

It is any wonder my brain has decided to check out?

In 2016 I started having seizures during an extremely stressful time of my life. It was determined they were psychogenic non-epileptic seizures. You can read more about that in this post: Psychogenic Non-Epileptic Seizures What Are They? Since that time I haven’t had many, only a few and only in times of great pain (like when I was in the ER for my migraine) or extreme stress (like after a vertigo attack that happened during the mania). Lately they have been coming regularly. It is increasing my pain levels dramatically. When I have a seizure it looks like a grand mal seizure. It starts with my right hand twitching, then the arm goes, and the whole right side twitches and curves back, my head draws back, my muscles are all tight and spasming. It is very painful, and my neck and shoulder on the right side still hurt so much. I feel tingly on that side, and I just feel so off. During the seizure I am mostly aware, but I can’t do anything. Sometimes I’m not as aware, sometimes I’m very confused when it’s over. I always cry when it’s over. I feel so exposed, vulnerable, scared, and unsafe.

Just a year ago I was doing so much better I bought a car. I was driving, cooking, shopping, painting, swimming…. I don’t understand what happened. I’m not asking “Why me?” or anything like that, I’m simply confused. I know we made a major move, but I was doing pretty good for the first few months we were here, so I really don’t think it was the stress of moving. But I guess one stress could possibly have snow balled into a bigger stress… into a bigger stress… into more illness…but who really knows. All this could have happened no matter what. It could have happened independently, but it just happened to happen one right after another I suppose.

Where does it leave me now?

Migraines – I’m still starting Aimovig on the 28th for my migraines, but I won’t know if it’s working for 3 months. I just finished a round of steroids hoping to get a break from the pain, it did lower the pain level, but they made me so sick I couldn’t enjoy it. (Oh boy was I sick, Meniere’s and steroids do not mesh well together, at least not with me). I may go to the pain clinic to get injections in my neck, I haven’t decided about that yet. Just a little scared about that one. Oh, the Migranal nasal spray is working as a rescue medication, thankfully. It doesn’t completely take it away, but it comes close, so I am having a little bit of relief twice a week. More than I was getting, but as I said, it doesn’t take it all away, it takes it from a 10 to a 7 or maybe, if I’m lucky a 6. Ah….a 6…but that is a rarity.

Mental Health – I started a new antidepressant, Trintellix, on Tuesday. I’m to try it for 2 weeks and if it doesn’t work we’re going to try Ketamine. I’ve tried everything else. This should be interesting. I’m working with both my psychiatrist and my psychologist about my seizures. I need to get my pain and stress under control. One step at a time. Just one moment at a time.

Home life – We’ll be moving into one of Stuart’s dad’s houses the beginning of November. The house Stuart grew up in. We aren’t sure if we’ll continue to look for a house to buy, or if we’ll stay there and renovate his house. The house is a bit further out than we planned to live, so we’re going to live there for a while to see how we like it. Kinda cool that we can do that. I’ve just been freaking out a little about not having a home, and needing to settle down. I’ve been feeling so lost and temporary ever since we moved from our house, six years ago, but it’s been so much worse since we moved here. When we moved here we basically got rid of everything. We have 2 chairs in our living room, and one is very uncomfortable. We have no dining room furniture. Our home is very sparse. We did not plan on renting for this long. It’s just so hard on me. This has just been so hard. I need stability. I NEED IT.

Right now I feel very alone, vulnerable, and scared. The only place I feel safe is in my husband’s arms. He literally saves my life every day. I told him that if it wasn’t for him I wouldn’t be here any more. So much pain, both physically and mentally…it’s just so much. And my amazing husband told me that he loves me so much, he never wants to lose me, but it also makes him feel guilty because he knows how much I’m suffering. I don’t know how I ended up with such an amazing man. He’ll never know how much it helps me to know he hears me.

I have so much, a wonderful husband, a roof over my head, nice clothes, good food, access to quality health care, support…. and yet I’m so unhappy. I’m so very sad. It hurts so much. My thoughts are consumed with pain. I find no enjoyment in anything. A friend posted a question on her blog asking if you found out you were going to die what would you regret not doing more of….and I could not answer that question. First I thought, not helping others more, getting more involved…. But then I tried to think of something I enjoyed that I would wish I had done more of, and I had nothing. There are things I used to love to do, but now…..not so much. My art…nope. Cooking…too much work. Taking pictures…can’t see it. I can think of nothing. All I do is sit and color by number. And that’s not for enjoyment, it’s to take my mind off of the pain…the migraine, the chronic daily headache, the back pain, the neck pain, the hip pain, the bladder pain, the pelvic pain…so much pain every day.

life is suffering. life is pain. life is ever changing. life is impermanence.

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.

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.