Tag: Chronic Pain

Feeling heard, and communication frustration.

On By WendyIn Chronic Illness, Migraines4 Comments

Often a person with a chronic illness goes from doctor to doctor searching for answers, help, validation. We are often simply looking to be heard. We are often dismissed, and made to feel no one will ever truly listen, and hopefully help.

On July 27th I saw the PA from my doctor’s office. She was giving me nerve blocks for my migraines. She went over everything beforehand and asked ME where I thought the blocks would help the most. She also examined me and found some very tight muscles, so she gave me blocks there too. I was so impressed. She took her time, and really listened. I did not feel rushed at all, yet they are always on time for my appointment.

I now have a Botox treatment set up, and my next nerve blocks scheduled.

My insurance still hasn’t approved my inpatient stay. Hopefully it will be soon. Of course all my appointments may need to be shuffled if I get approval. They call and say, “can you come now?”. We’re 2.5 – 3 hours away, with pets, it’s hard to drop everything and get going. Luckily we found another pet sitter and our dog really likes her! She doesn’t like anyone (except my sister, but she 3000 miles away),we are so relieved. It really makes things easier.

We spent the night in Phoenix and were able to spend time with Dad’s (Stuart’s father’s) cousin. She is such a doll. She’s visiting her best friend since grade school, amazing right?!, she lives near Phoenix so it was easy to squeeze in a visit while we were there.. Both of those women are amazing people. I so enjoy every visit we have with them.

UPDATE!

Found out day before yesterday that insurance approved the ketamine treatment on the 18th of last month! They simply didn’t tell anyone! How can insurance companies get away with this? They did send us a letter saying they had approved a treatment, but didn’t say what it was. We thought it was for the nerve blocks. When the hospital asked them to fax the approval, they sent the letter they sent to us! What the heck? At least they found that it had a code on it so they understood it.

Stuart has been playing phone tag with the hospital because he got a message that I need a blood test and EKG. I didn’t’ last time, I think they did it when I got there. Still waiting to find out what that’s about, and if I need it beforehand, where do I get it? I really don’t want to go to Phoenix for it.

I also hurt my hip, the one that was replaced 7 years ago, I was very afraid that it would interfere with my trip to the hospital since I move a lot during the treatment. I know wouldn’t be able to be mindful of how I’m moving my hip during it, but suddenly it seems to be much better. Night before last I moved a certain way and my hip popped, it was very intense pain that caused a very sharp pain down my leg, today I’m moving better and feeling little to no pain from my hip. hmmm, could that pop have been a good thing? I’m just thrilled I don’t feel I need to see an orthopedist before going inpatient for the ketamine treatment.

ANOTHER UPATED

Well if I’d actually publish this post I wouldn’t keep getting new things pop up….but then again, probably not.

I am going to Barrow on Wednesday, August 10th, to get the EKG and blood work. Yes this is a new requirement…who knows why. We’re hoping I can be admitted the next day so we can just spend the night in Phoenix and not have to return to Tucson. Cross fingers and toes.

Now I’m going to actually close this post and publish it.

I’m in a lot of pain right now despite taking meds, but they are making me sleepy so I think a nap my be in my immediate future.

Advertisement

Maxi-Me Update

On By WendyIn Chronic Illness6 Comments
We had a beautiful sunset recently, this is the view from my house. Too bad there’s power lines in there, but the cactus silhouettes sure are pretty

I’m shocked that it’s been so long since I wrote an update on me. The last month, or more has been stressful to say the least.

I just looked back at my last few posts and it looks like I have a lot to catch up on, forgive me if I really have said some of this. I wish I’d written it all before, I like to keep up with things and this is one of the best ways I have of documenting things. So, here goes…

I went to Barrow Headache Clinic in Phoenix, and I really like the doctors there. I saw a neurologist who isn’t part of the actual headache clinic, this was the best way to be seen sooner, the wait to see one of the doctors in the headache clinic was much longer. However, the doctor I did see has been working with the doctors who specialize in headaches. I’ve actually had 3 doctors working on my case. When I had the appointment I didn’t feel rushed at all. I felt like I was respected, that they understood that I’m very knowledgeable about headache disorders (mine in particular) and they trusted me when I told them what I had tried and what didn’t work. They are working hard to help, but they aren’t doing in-patient treatment right now because of the increase in Covid cases. That’s hard. However, they are trying new medications, have changed up some that I was already on (increased some doses, changed forms of some…) So far, I’m very impressed. The only thing I’ve had a hard time with was that I had a hard time getting the patient portal to work, and no one could seem to figure out why. I’d get in, but it had no record of me being seen there, no record of upcoming appointment, no way to message my provider…nothing. Finally it is fixed, that’s making things much easier.

They ordered a Tilt Table Test to see if I’m having blood pressure problems when i stand, or if I have POTS (Postural orthostatic tachycardia syndrome). It did show that my BP is dropping significantly when I stand. (Orthostatic hypotension — also called postural hypotension) It doesn’t appear that I have POTS, if so it’s mild. As you may recall I have been having some pretty high spikes in my BP, which caused a Branch Retinal Vein Occlusion in my left eye, it seems I’ll never recover all of my eyesight in that eye. It’s not bad, but the lower part of my vision is very blurry, it makes it hard to read and to see things clearly on my left side. It may get better, it probably won’t. The last time I went to the retina specialist (about a month ago) it showed that it had bled again, that’s why my vision was a bit worse. I got another shot in my eye, and i go back to him next week. (It was supposed to be a couple of weeks ago, but I had a Meniere’s Flare that lasted over a month). He told me that the reason it bled again is because I had another spike in my BP since the last time I saw him. So, what do we do about my BP. I’m on BP meds for hypertension, which may be causing my BP dropping problems, but it might not. I see my PCP in a week or so to discuss this, I really hope we can figure something out. I’m tired of feeling faint when I stand, my vision blacking and the pain in my head spiking when I squat down and get back up. It’s difficult, if this is contributing to my pain, this needs to change.

I do have hope, but I’m very tired.

The Meniere’s flare really did a number on me. My ENT put me on steroids to break it but it seems to make it worse. It also caused me to be ravenous, emotional, paranoid, restless….it was hard. I looked over my journal entries during that time and they are dark, and very sad.

I’m having wide spread pain. I was diagnosed with fibromyalgia many years ago, but after I made a lot of diet changed, it seemed to calm down a lot. I’d only have short-lived flares. But lately, it hasn’t stopped for quite some time. My body hurts.

I’m very tired. Exhausted.

Stuart is starting a new job next week. It is only paritally remote, he will have to go in to the office some. That makes me nervous. I’m okay, trying not to worry about the future, sometimes I succeed, sometimes I don’t. Of course the Meniere’s flare showed me the worst that could happen. I had severe disequilibrium and minor vertigo for so long. I couldn’t even walk by myself. My walker was of no use, I was way too off balance and would just tumble over. S even had to help me to the bathroom. I didn’t realize how often I pee! I met with a couple of my neighbors and asked if they knew of anyone who might be able to helpo me when S has to work in the office, taking me to some appointments, perhaps coming to help if I’m too off balance…anything that comes up. Both immediately said they were very willing to help. one can’t drive me to appointment right now (she’s having some trouble with her back and it’s causes neuropathy in her feet, hopefully that won’t last), the other is more than willing when she can. She’s a bit busy so I need to make plans as far in advance as I can. I really hope this works. I’m so amazed how the people in this neighborhood have embraced me. I’m sad I haven’t had the opportunity to meet more of them, but Covid got in the way. I can’t believe we are going on 2 years of this. I don’t think it will ever go away, but I sure hope we can deal with it better/easier in the not to distant future.

Another big stressor, my therapist is retiring. At first I thought it was no big deal. I was okay with everything. Now, not so much. I’ve been very anxious. And I realized just how much I am going to miss her. When I first moved here I knew no one, she was my only real contact with people other than S’s family. That’s not good. So she didn’t just feel like my therapist, she feels like a friend. I’m really going to miss her. It makes me cry just thinking about it. This week I met with a therapist who may be my new therapist, I believe in meeting at least 3 times before deciding that, but I felt very comfortable with her, I think it might be a good fit. She even said that my old therapist could join us in a session to help with the transition. I decided that would be too hard on me trying to hear them both, so they are just going to talk so my old therapist can give her an idea of who I am. My present therapist told me, “I’ll tell you everything we talk about” She is so supportive of me. She’s always telling me how special I am, how se admires how I handle things, how strong I am….I don’t think I come across that way to many other people, I’m glad someone does. I do try so very hard.

Well, I’m getting very emotional so I don’t think I can continue right now.

And I haven’t read it over for errors, I’m sure you’ll understand and it will give you an insight as to how I think I guess.

Being disheartened, and hopeful.

On By WendyIn Chronic Illness, Headaches, Migraines, nerve pain8 Comments
Mexican Poppies, Tucson, AZ. by W. Holcombe

I don’t even know where I left off so I’m just going to ramble a bit. I guess I’m too lazy to read my last post, or just not in a good frame of mind lately.

A lot has been going on. I had an injection (epidural) in my neck to help the disc bulge on February 22nd, and lately it seems to be wearing off. I’ll be getting a second injection on the 22nd of this month. They say it can take a couple of injections to get the full effect when you first start getting them, so hopefully this one will last a long time. I’m just concerned because they don’t normally give more than 3 injections a year, what if this one wears off in just a couple of months? Even if they would give me more injections, I’m not sure that’s wise considering I had Avascular Necrosis (AVN) in my left hip causing a total hip replacement, which they believe was caused by steroid use. Trying hard not to think about all of that, just take it one day at a time, but wouldn’t it be irresponsible of me not to at least be concerned about this? When I talk to my doctor he just said that it’s always more of a chance once you’ve had AVN, but it’s the only thing they can do to relieve the pain right now. Later, if it gets worse, they can do surgery, but who wants to have surgery on their neck? That’s pretty darn scary to me. But I will NOT think about that! That really is getting worked up about what might never happen. Of course, I was getting upset about the whole injection thing, so I guess I really should just take it as it comes, and not get worried about things that may never happen.

I was about to tell you how happy I was about something that caused me to look at the calendar to check the date….Wow! It’s been a long time since I posted! It’s been a bit busy here. Anyway, my happiness… I had a Vyepti infusion on the 16th of March, it was my first infusion at the higher dose. Afterward, I had NO migraines on the 18th, 19th, 20th, and 21st!! After a YEAR of migraine pain, I had FOUR days without one!! I was so happy and so hopeful. even after a bad on the 22nd, I was still hopeful that I’d have migraine free days once again. That hasn’t happened. Since then I’ve had 8 days where my migraine made it impossible for me to do anything except curl in a dark room. The rest of the days I’ve still had migraines but I was able to do something, even if just a little.

I’ve been feeling so disheartened. It looks like the PT didn’t help the pain at all, only with the injection have I been able to get relief from the horrible nerve pain. It did however, improve my range of motion and strength. So I’ll continue my exercises and hope for the best. I had a little break in my migraines, but it was very short lived. My mood has fluctuated from happy, to anger, to sadness…

courtesy of Headspace

Then last night I saw in an article on Migraine Strong that a new neuromodulationdevice for migraines has been approved by the FDA. I already have the Cefaly and the Nerivio and bot word to some degree. The Cefaly is the best for me. It stimulates the supraorbital branch of the transgemial nerve. The Nerivio stimulates nerves in the arm that makes your brain focus on it and off the migraine pain, it’s kind of interesting. The Nervio works for me only if I use it at the very beginning of a migraine, when you are intractable it’s impossible to catch it at the Start of a migraine.

“Relivion targets two main nerve branches believed to be involved in the Migraine process: the trigeminal nerve branches in the front of the head and the occipital nerve branches in the back of the head.”

This gives me hope. Hope that I might get some relief. However, since it isn’t on the market yet they don’t know how much it will cost or if it will be covered by insurance. Since I’m on Medicare, if they have a discount I won’t be eligible. That’s very unfortunate. I did just find out that if you are on Medicare you should reach out to the manufacturer to see if they will offer you a discount. We’ll see if I can get it. crossing fingers. If not, I guess it wasn’t for me.

I’ve been looking at a headache clinic in Phoenix, but I don’t see where they offer more than I’ve already tried. I honestly don’t know what to do or, where to go for help. Would Mayo offer more? I just don’t know. I have an appointment with a new headache doctor, but the first appointment she had for new patients is in November! It’s really crazy how in demand headache specialist are, and how few there are. I just read in Practical Neurology “If all patients with migraine were cared for by a UCNS board-certified headache specialist, each would see approximately 78,000 patients per year”. UNCS is the United Council for Neurologic Specialities. Personally, don’t actually think that all patients with migraine need to see a specialist, however if you do not respond to typical treatments you do need to see one. That can be very difficult. The average neurologist receives just 4 hours of training on headache disorders. There are about 500 headache specialist in the US. Migraine affects 1 in 7 people world wide. It’s just crazy that we don’t have more doctors who specialize in it. Tucson has 2, one is certified by UCNS, the other is certified by the Certificate of Added Qualifications (CAQ). The later is who I’ve been seeing, the former is who I have an appointment with in November. I’m very lucky that I have access to a headache specialist at all, there are some states that have none!

I’m so grateful for all the new medications and new neuromodulation devices that have come out for migraine. It’s amazing really since there is so little money allocated to migraine research. There is so much they do not know.

On a good note, I got my first vaccine shot, and get the second on Saturday! Woot! I’ll still wear a mask and be careful, but I might actually go out some.

I plan to have a give away soon. I received a lot of things from the Retreat Migraine conference (virtual), and I can’t use all of it. Stuart also got a goodie box since he attended too, so I have some of that to give away too. I just want to give back to you, after all the support you’ve given me over the years.

I’m thinking of starting Mindfulness Monday again. I’d like your input if you’d like that or not?

“See” you soon!

I can type again

On By WendyIn Chronic Illness, Pain14 Comments
Photo by Min An on Pexels.com

When last we spoke I was hurting too much to type. I’m happy to say that I can type again! I’m not sure I have too much to say, but at least I can type. I’m going to try to be brief here, just letting you guys know that I’m okay, and I’ll try to post more often.

For the past few months I’ve been consumed by the nerve pain going down my arms and bursting out of my hands. The pain also traveled down my back, in between my shoulder blades. I’ve had a lot of pain in my life, but this nerve pain has, by far, been the worst. I believe in accepting what comes and being okay with it. Everything changes, you just need to go with it. This pain I could not accept, and that hurt me as a person. I couldn’t accept what was happening to me, the pain was just too great. I have a much deeper understanding of what severe pain can do to you. I saw what it was doing to me, and I didn’t like it, but I couldn’t change it. How can anyone accept feeling like their hands are on fire from the inside out, every morning! I would scream with pain. I made bargains, if it would just stop I promised I’d be a better person…ect. I have never wished to die so often, and I’m not depressed. Can you imagine how messed up I’d be if I was going through this with depression? I can’t even imagine.

I was in physical therapy in January, and it seemed to be working, then I had a set back and we kind of started over. Then I felt like I was getting better, then I hit a wall and crashed. Every time we tried adding any strength training all my symptoms would return. It has been hell so far this year….but it’s getting better.

Last Monday I finally got an epidural in my neck and trigger point injections through my trapezius on both sides. I cannot express enough how this has changed my life! I’m no longer afraid to go to sleep for fear of what will happen when I wake up. I’m sleeping more than 4 hours a night. I actually slept for 10 hours one day this week! I think I’m still catching up on sleep.

Migraines are still here. Both my physical therapist and my pain management doctor think that my migraines may be so much worse because of my neck. The last two days I’ve had a very intense migraine. That’s really hard when you don’t have a rescue med that works and Medicare won’t pay for the only one that does. I don’t have thousands of dollars to spend on medication each month. So I’ll live with the pain, for now. The pain changes from day to day, hour to hour, it’s often just in the background, but when it climbs too high, I really notice. But that’s the thing, yes I’m in pain all the time, but it is constantly changing, that gives me hope. Everything changes.

Okay that’s it for today. I promise I’ll try to be back soon. I have lots of migraine stuff I want to share with you all.

How is everyone? I really want to know.

What I love about the holidays during COVID-19

On By WendyIn Chronic Illness10 Comments
Image by Jill Wellington from Pixabay

As much as I love most things about the holidays, the stress is not one of them, and oh, how stressful they can be. This year, it’s different.

Having multiple chronic illnesses that have kind of ravaged me lately, I’m thankful this year the holidays mean no stress…or as little as can be.

There’s one person (or maybe two) that I always have to see during the holidays that I’d prefer not to spend time with. This year is different, I don’t have to. When we were asked what the plans were for the holidays, it was nice to say that we are isolating. (With the number of COVID cases rising each day, why would anyone risk getting together? I don’t get it. I’d rather have my loved ones alive and well so we can get together when it’s safe.)

I don’t have to get upset if I’m not invited to parties.

On the other side, when I am invited to a party, I don’t have to worry I won’t be able to go, or might get sick while I’m there.

I don’t have to decorate my house for drop in guests.

I don’t have to feel bad when I can’t host a dinner…no matter how much I’d like to.

This year it will be quiet. I still feel like I need to make nice meals, and cookies, and…. But I don’t have to, and if I don’t, no one will know.

I can just sit back and watch Christmas shows on TV, sing carols out of tune, and eat Chinese take-out if I want.

Okay, the first two, yeah, that will get done, but the Chinese take-out might not. We’ll probably have Dad over for a social distance meal on Christmas, but who knows. Maybe not. It’s a no stress holiday after all.

Remember, we aren’t STUCK at home, we are SAFE at home….and so are our loved ones.

Merry Christmas!

Mini Me Update

On By WendyIn Chronic Illness17 Comments

I know my last post was a bit bleak, but things are getting better, I think.

I still have this dang migraine with no relief in sight, but I haven’t given up hope. My useless stay in the hospital and the indifference my migraine doctor showed about the akathisia has lit a fire under me to find a new headache specialist, which is much harder than you might think.

Luckily the medication that my PCP sent and the medication that my psychiatrist gave me have mostly taken away the akathisia. I still feel a bit antsy and my anxiety is higher, but I don’t HAVE to move all the time. I’m amazed the akathisia was so bad and has lasted so long from 3 doses of Compazine, I’m so grateful for my PCP and psychiatrist for helping me. My PCP even offered to call my migraine doctor to stress how important this was. My migraine doctor did call, after I sent a message to her about how unacceptable it was that she hadn’t gotten in touch with me. When she called she had to talk to Stuart, of course, and said she was out the office on Monday (in my message I told her that another doctor in her practice should have been covering her for her if she was out of the office. I also told her how my other doctors had helped), and said he had been researching how to help. Really? When Stuart first called her we gave her the name of one of the drugs that help with akathisia, so she already had that information. I got it after a quick Google search. It sure didn’t take me THREE days to get it.

Now I have to not only search for a new headache specialist, but I also have to look for a new PCP because mine is moving next month. Hopefully, this will be an easy process, and I’ll find some great doctors. I know finding a new headache specialist is going to be hard, there are only around 500 in the country. I don’t like the idea of having to travel 100+miles to see a doctor, but I may have no choice.

One thing that came from this, I’m really proud of how I advocated for myself while I was in the hospital and for messaging my doctor about how unacceptable her actions (or inactions) were. Since I lost my hearing it has been very hard for me to do that, but I made sure in the hospital when a nurse and tech ignored the fact that I have hearing loss, that they understood what they were doing wrong. Hopefully they will change their actions in the future.

One of the medications my doctors gave me for the akathisia makes me so stupid. I am forgetting everything! I can’t remember what I was talking about in the middle of talking! Right in the middle of a sentence I’ll look at Stuart and say, “What was I talking about?” It has been very confusing, luckily it will go away once I’m off the medication. I cut it down from 2 pills a day to 1 a day since my symptoms are so much better, and the confusion is much better all ready.

I don’t remember what else I was going to write, so I’ll close for now.

How is everyone holding up? Have you known anyone personally who has been infected with COVID-19? Do you happen to know a good headache specialist in Tucson? hahaha

I didn’t close my blog, I promise

On By WendyIn Chronic Illness13 Comments

It’s been so long since I posted I’m sure you all thought I was gone for good. Unfortunately this has to be a very short post.

Presently I’m in a lot of pain all the time. I still have that intractable migraine I’ve had since late April, luckily it varies in intensity, often having much lower pain days. However, there are days it is absolutely excruciating. That isn’t the worst thing I’m having to deal with right now, I’m also having very severe nerve pain across my shoulder, down my arms and the worst is my hands. It’s better when I’m lying flat with my arms at my sides, but I can’t do that all the time. I’m getting a CT scan soon to see if the nerves are impinged in my neck, if so the pain doctor will give me an epidural to help. It hurts so much I have to stop posting this every few seconds just so I can tolerate it a little.

On top of it all I’ve had a severe rash for over a month. The doctors aren’t sure what it is. It is incredibly itchy, it is torture. My allergist thinks it’s the rash you get when you are Celiac and got gluten, dermatitis herpaformis. I had a biopsy last Thursday to hopefully get an answers.

This is in various places all over my body, my back and this arm are the worse. There are many, many bumps you can’t see in this photo.

I think I’m a pretty strong person. After all I’ve been dealing with Meniere’s for MANY years, and I broke my neck in 1992. I’m not a stranger to healty adversities. But I have to admit, this is really getting to me. It’s just so much on top of another. It hasn’t just been a straw that broke this camel’s back, I was hit bye an anvil! I’m so grateful my antidepressant (esketamine) has been working, or I’d be worse than I am now, and right now I feel like blowing my head off.

Now I have to close, I simply can’t type any longer, but I have so much more to say. Hopefully I can post again soon.

Nothing is working

On By WendyIn Chronic Illness, Migraines11 Comments
Photo by Anna Shvets on Pexels.com

Last I was here, a loooong time ago, I mentioned all the new things I’m trying, or would be trying. Well, nothing is working to get rid of this migraine. Some of the devices (Nerivio and Ceflay) help reduce it so I am somewhat able to do things on better days, but they never take it away.

I had my Vyepti infusion on the 26th, I should have seen progress within the first week, unfortunately there has been no change. I still have this migraine I’ve had for MONTHS now. Some days it’s a little better, many days I just want to rip my head off. The pain really gets to you, especially when it’s accompanied by other symptoms that aren’t so pleasant. The light sensitivity is especially hard for me, I feel like I’m living in the dark all the time, if I’m not in the dark I’m wishing I was. I live in the desert, it’s friggin’ bright here! And the heat! Last two months have been the hottest on record, thankfully it’s starting to cool down a bit, we’ve had some days that have been in the 80’s this week. Yay! I’m finding that bright light and heat are a trigger for me. Or maybe it’s just because I have a migraine that WILL NOT STOP!

So I wrote my neurologist (who is a headache specialist) and asked about two things. I wanted to know if I haven’t seen results from the Vyepti by now would it be worth trying the higher dose. I also asked about a new symptom (I’m having some weird headache pain when I turn over in bed at night my head will suddenly explode in severe pain. It feels a lot like when I was having Idiopatic Intracranial Hypertension, but I’m not getting symptoms when I’m horizontal or vertical. (normally when you have intracranial hypertension the pain is much worse when you are lying down and relieved when you sit up, if your cerebral spinal fluid is low then you have pain when you are up and not when you lie down). In closing I asked her if she had any recommendations.

I received an answer that was disturbing. 

"1. so any new headache as you might imagine I cannot assess by email. I would need to see you in person to really thoroughly discuss and evaluate. We can set an appointment but I am taking off a week at the end of the month and have surgery so my schedule is a little bit messed up 2. We can certainly try the 300 mg however it is not covered by any insurance and statistically it was not that much better than 100 mg so unfortunately it would probably be a cash pay situation which I would not suggest. However overall I would have expected some benefit by now. 3. Next option would be to get another opinion unfortunately best next opinion in my opinion would be in San Diego"

My response to that, which I haven’t sent, is 1. I already have an appointment set up for October 7th, I doubt I can get in before then; even when she doesn’t have all these things it’s impossible to get in to see her in a timely manner. I sure hope this new headache isn’t anything serious. 2. Well no I don’t want to try the higher dose under those circumstances. and 3. Well it’s obvious I’m beyond her capabilities. I understand how frustrated she may be but, San Diego?!?! That is over 6 hours away from here! I do not understand why there isn’t anything at Mayo, it’s just a couple of hours from here. I am willing to go anywhere but not when my husband doesn’t have a job, and often insurance companies won’t pay for treatment out of state unless it’s an emergency. I tried to go to a doctor in San Diego before and my insurance would not approve it. Perhaps if my doctor here is sending me it would be different? Who knows, my insurance can take months to decide things anyway.

Stuart still doesn’t have employment. He did have a very encouraging interview, so we are hopeful, but who knows. It’s a big pay cut if he gets it, but it’s much better than nothing., and it’s easier to look for a job when you have one. We are doing okay financially, but going to San Diego right now isn’t possible, and when he gets a new job I can’t ask him to take time off to cart me to a different state for treatment. I’m hoping when he gets a new job that we have better insurance. The one we have now is a pain to deal with. It was much easier with Blue Cross. Not that any insurance company is great. I’m so grateful I have Medicare to supplement my private insurance.

I’m so discouraged. It seems like any treatment I’ve gotten for my pain hasn’t worked. My pain management doctor tried injections in my neck and it didn’t work. I can’t take most things they give people for pain. I can’t take opioids, they make me itch like crazy! I can’t take NSAIDS because they eat up my stomach. I started a new medication, Low Dose Naltrexon. With this medication I probably won’t see any effect for months. We’ll see, but after everything, I don’t have a lot of hope. (this is the same medication they use to help with opioid addiction, but at a much higher dose. You can read more about LDN on the LDN Research Trust site.

I realized the other day just how long I’ve been dealing with being sick. I’ve basically been sick most of my life, but things got much worse in 2001, that’s when the Meniere’s disease started getting worse and basically consumed my life. In 2008 I stated seeing new doctors at Duke and they told me I was disabled, from both the Meniere’s and my chronic migraines. It took me until 2015 to accept that and actually file for disability. I just realized though how many treatments I’ve tried to help me, and how long of a fight it has been. 19 years I’ve been dealing with being severely chronically ill. I’ve been ill for basically my whole life, but it wasn’t severe until 2001, it was at that time that I had to stop working full time, it wasn’t long after that that I had to quit working all together. I’m so extremely lucky that I was able to not work.

I’m still trying a few things, I’m seeing an allergist next week, maybe some of my migraines are coming from that. Stuart is going to call the doctor in San Diego and see if they have virtual visits, how the insurance works, how they treat intractable migraines, and if there is a patient portal or email so I can communicate with them directly. Then he is going to call Mayo with the same questions and see how different it is.

This is getting long and I feel like I’m just whining. I don’t mean to be. I realize that when you have a chronic illness you end up having to grieve over and over, every time there is a loss. Having my doctor tell me she can’t help is a huge thing I have to accept. I have to accept that no one may be able to help. Right now I’m just trying to survive with a status migraine (formerly called an intractable migraine) and increased Meniere’s attacks (a lot more vertigo, hearing changes, even with my cochlear implants, and the feeling of fullness in my ears.

One day at a time.

Late Night Rambling

On By WendyIn Chronic Illness, Migraines, Pain15 Comments
Me, manipulated in the #photolab app

It’s 1:29am and I can’t sleep. I hurt all over, and I’ve been having vertigo and migraines with all the symptoms that go with it.

I’m posting from my phone so who knows how this will turn out. I doubt I’ll be able to edit it very well. I apologise for errors ahead of time.

It’s been over 2 months now since Stuart got laid off, I’m not tired of him, but I do miss my private time. However, I’ve been having such an increase in symptoms it’s probably best that I’m not alone all that much.

I’m tired. So very tired.

I’ve had a non-stop migraine for almost two months now and I, at least partially, blame my doctor. I had a tele-health appointment with her the beginning of May, right when we were increasing my Spravato treatments back up to two a week and I had every reason to believe that my migraines would get better again. They didn’t, they got worse, and I have no rescue medication that works. I got in touch with her less than two weeks after my appointment to ask for help and she said I need another appointment, so I’ve been waiting two month! The soonest they could get me in was July 17th. I’m finally going to see her next Friday. Now I have a Status Migraine, that’s a bitch to treat. I don’t know if this would have happened anyway, but I feel if I’m in this kind of situation she needs to take care of her patient, so I’m searching for a new doctor. I’m tired of her never being available when I need her.

I had the freakiest, thing happen to me earlier. I was sitting on the toilet and it felt like the toilet started moving under me. Normally when I have vertigo it feels like I’m moving, or the whole room is swaying/rocking..ect. it has never felt like the seat under me is wiggling. Soon I did feel like I was moving, well, it felt like my brain was. It still does just a little, much more if I move my head. I’m so grateful I have an amazing husband who will help me off the toilet and to the bed when things like this happen.

When I got to the bed I could literally feel my brain trying to spin in my head. My eyes weren’t all the way spinning, my vision was a little off, but not like it can be. I rarely have that sensation any more, thank goodness, it’s really hard not to throw up when you see the world spinning around you. It’s hard enough as it is. Right now, When I move my head it feel as if my brain rotates and moves around in my head. My internal gyroscope doesn’t work. My vision spins for a few seconds, and I can feel bile coming up my throat. The only hope for sleep is to lie perfectly still and hope I don’t turn over in my sleep until this has passed.

Now it’s after 2am, I don’t know if the pain will allow me to sleep, but I’m going to try.

Trying to write

On By WendyIn Chronic Illness15 Comments

I’ve started countless posts but, like so much in life now, I haven’t finished any. Do I write about me? How my treatments aren’t working as well as they were in the beginning? How my migraines and vertigo have once again taken over my life? or do I write about the travesties that are going on in this country? I’ve never used my blog as a political voice, I never want anyone to feel excluded or uncomfortable here, but I also feel so compelled to shout from the rooftops that I demand change! I was at the point recently that I simply no longer wanted to live in a world where people treated each other the way we do here. On Juneteenth we celebrated the 155th anniversary of the freedom of the last slaves in the United States. 155 years and racism is still rampant. Our leaders should be bringing us together, instead there is fuel being thrown on the fires.

View of the Bighorn Fire from my home on June 19th, 2020

It doesn’t help that each day I look outside and literally see fire. Normally when I need to escape from the stress of the world I retreat to nature, it calms me, but where I live we are in the midst of a natural disaster. A fire, named The Bighorn Fire, started by lightening on June 5th in the Catalina Mountains surrounding Tucson has burned over 58,500 acres so far and it’s 19% contained. We have an air quality advisory because of the smoke. The masks might help in more ways than one huh?

Speaking of masks, our mayor has issued an ordinance requiring everyone over the age of two to wear a mask when in public (there are a few exemptions) if you do not wear a mask you can be fined or be required to do community service. This is in response to the extreme jump in the number of COVID-19 cases Arizona has been experiencing since we reopened. I applaud her bravery for this, I wish our state, and national, leaders would take such an initiative. I feel it’s my Civic and Human duty to wear a mask. I wear a mask not to protect ME. I wear a mask to protect YOU! Is this political? I don’t think so. This is a health issue. We need to take care of each other. Wearing a mask is to prevent the spread of the virus when you are asymptomatic. Be kind to your fellow human, wear a mask. The life you save may be someone you love.

I think about being here, and talking with you, my friends. I think about sharing my thoughts, my fears, my pain, my dreams. June is Migraine and Headache Awareness Month. Yesterday was Shades for Migraines Day. I was so proud of myself that I at least got a post on Facebook and Instagram with a photo of me and Stuart in our “Shades”, but I had a lot of post planned for this month, they didn’t happen. So many other things happened this month. My migraines are back to being daily. I haven’t had a break in days other than the few hours I get when I go in for treatment, but it no longer last. I still have lots to say on this subject and just because the month is going to end doesn’t mean I’m going to stop being an advocate. I will be posting much more about migraine. I have a lot of information to share, a lot of promise for many people, a lot of hope. Oh, and I will be seeing my doctor in about 3 weeks, so cross your fingers we can get some kind of rescue medication for me. As I said a lot of hope out there. And that’s how I will close for the day…..with hope.

#shadesformigraine #mham