Tag: Pain

Really quick update

On By WendyIn Advocate, Chronic Illness, Headaches5 Comments

I forgot to hit Publish, I wrote this a couple of weeks ago…or last week, I don’t remember. I’m still having a little bit of memory issues. So…her it goes.

The hospital has acted on my complaint.

The staff has had a training session on how to handle patients.

Do not assume the patient is in the wrong.

Do not ASSUME anything, UNDERSTAND what is happening then react.

Never react unless you understand.

Security should only be called when patient is a threat to themselves or others.

That is part of the training the nurses and staff on the neurology floor have now been given.

Since the hospital lost a lot of their staff due to COVID some of the training hasn’t been done. They are certified in their positions, the nurses have graduated, but they haven’t had proper training in how to handle every situation.

This was not supposed to be said to us, but the person who is monitoring complaints (and talking to S) was a nurse for 40 years, she sees how different it is since the pandemic. She is trying her best to make sure nothing like what I went through happens to another person. That’s all I wanted.

Finally it is in my records that I am deaf with cochlear implants. I thought it was in there before, so that confused me. We were told if I have to go in that hospital again I need to make sure there is a sign on the door that says “STOP patient is deaf with cochlear implants”, they all need to know I can’t hear everything that is said, sometimes I can’t hear anything that is said.

I won’t be getting ketamine any more. I’m very disheartened that it did not work. I felt like it was the last resort. I pretty much still feel that way, but I’m not giving up! I’ll keep trying, that’s all I can do. It’s very hard to live with a constant migraine, people who’ve never had one cannot understand, but they can be sympathetic and supportive. If you don’t have anyone in your life who meets those requirements I suggest you go out and find someone as fast as you can. If there’s no one at home to support you, reach out to a support group, in person or on line. If you need, contact me, there’s a tab for that at the top of the page. (note I do not accept request to post on my blog to advertise a product…) I am very happy to talk with anyone who needs support. Or just someone to vent to.

That’s all for now,

I hope you are all safe and as well as you possibly can be.

W

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Muddling along

On By WendyIn Chronic Illness, Disability4 Comments

There’s really not that much to update, but I’ll try and tell you all what’s going on.

I added to our complaint about how I was treated in the hospital, I was upset when that wrote me back saying they couldn’t fine my original complaint. At least they wrote me back, perhaps I’m now in touch with people who can make a difference. It’s upsetting that I had to say I felt my disability was ignored before I got the attention of someone. Yes I am considering writing to the States Disability board who enforces the ADA (Americans with Disabilities Act) We are now in the process of writing our a letter that will be sent to the hospital and Medicare. I haven’t contacted the state about my disability being ignored before now is because Medicare often takes care of that. We will then be sending the letters by registered mail so we get a signature that it was received

This has been incredibly hard on me since I do not remember a lot of my hospital stay. I don’t remember the first time I was going to be discharged before I was ready to be. However, I do remember the next day when I was forced to be discharged before we knew how the opioid they had just given me would react with me.

Forgive me if I’m not saying all of this with the proper grammar, I’m still incredibly upset about it all. The email I received stating they had no record of my original complaint has been a huge trigger. I need to get all of this resolved. I’m trying very hard to be a good advocate for myself. People do not understand how very hard that can be.

I have felt that my migraines have been less intense. About once or twice a week I had one that is untreatable no matter how much medication I throw at it. But I’m having Yellow days most of the time. (explanation of the traffic light system for rating migraines can be found here) That’s a huge difference. I don’t know if it’s because of the reintroduction of Botox, the nerve blocks, or the increase in medications. Which ever it is, I’ll take it. I just hope it gets better and better, all Yellow and Red days is simply unbearable.

I’m having some huge cravings for sweets, I don’t normally have that. It’s weird and it’s bothering me… it freaks me out to gain weight after I lost so much. I’m trying hard to eat as healthy as I can, but it’s even harder when I’m not able to cook for myself, and I’m tasting things differently. Foods I normally love just taste weird. That can be a side effect of one of my meds, but it’s crazy that my oatmeal and butternut squash taste odd. Why can’t sweets and fried foods takes weird? I really try not to eat either of those, but lately I’m not succeeding all the time. I’m also much more constipated than before, I can’t help but this is also a side effect.

We’ve had a lot of unexpected expenses lately. Plumbing issues, needing to replace the AC in the casita. I sure am glad we have an emergency fund, but it will push back being able to get the yard landscaped, and replacing doors and blinds. That makes me a little sad, but it won’t be put off forever, and we can still get some of it done. (crossing fingers)

I should close now, my head is ramping up and I’m almost finished with this Spravato treatment.

Hope all are good out there. I’m not getting email notification when most blogs post so I need to take the time to check on you all.

Hope you are having a spooky season.

Never Again! Ketamine, and hospital bullying

On By WendyIn anxiety, Chronic Illness, Health Care6 Comments

This post may contain triggers for some. It talks about bullying, hospitals, trauma. Please take care of yourself first.

This Ketamine treatment was nothing like the first one.

I will never go though this again….NEVER.

I don’t remember anything real from the time they started the infusion until shortly before we left. I hallucinated the entire time, or maybe just lost time…who knows. Yet S tells me that I seemed lucid at\times. I knew there was a chance I could have hallucinations, and dissociate…but this was beyond what I ever expected.

I’m told I was having incredible abdominal pain…this happened last time, but only on the last day, but it was shrugged off as GERD. I received Mylanta and was discharged. I ended up in the ER two days later with severe pain and diarrhea that had been happening since I got home from the hospital. I was given a CT scan and test were taken, I was told I didn’t get any of the bad bugs (like Cdiff) in the hospital but they thought I did get something there. So I was put on a liquid diet for 2 days, followed by a bland diet for another two days, I was also given Dilaudin (a synthetic opioid derived from morphine) in the ER. All of those things relieved it.

This time I had severe pain during my treatment, again waking up screaming, and vomiting this time….I remember none of this. I was given meds, I don’t know what, but it didn’t help much. Again they wanted to discharge me (more about this later). I ended up back in the ER the day after I got home. First I was given Morphine, but it made me itch so much, it’s really hard to deal with intense pain and itching at the same time. I was also given two other medications, dilaudin, and haladol. The pain was so very intense. They actually thought I had constipation with the diarrhea. What? Who’s heard of such a thing? She said it showed on the CT scan, it also showed some “irritation and inflammation”. There is some condition called called paradoxical diarrhea or overflow diarrhea. It happens when watery stool leaks out around hard stool in the rectum. Have you ever heard of such a thing? I sure hadn’t. I don’t understand that, I was having regular BMs before the diarrhea. She wanted to admit me to give me a laxative to see if it helped. I was not willing to do it. I could do laxities at home. She also suggested a bland diet. I also took a stool softener, and magnesium oxide, and have had normal BMs since. I still don’t believe I had paradoxicol diarrhea. At least that part of me is fine. I am still having some stomach pain, but nothing like I was having. I’ll discuss it with my new PCP on the 16th. I’m so grateful I was accepted by this PCP, she used to be a headache specialist at Jefferson (a very prestigious headache clinic) so she is better suited to work with my doctor at the clinic in Phoenix, so I may not have to go there to get some treatments. This office came very highly recommended to me, by another doctor of mine. I hope they really are as good as they say.

More bad stuff

Okay so that was part of the horror of the ketamine. Although some of the visions were interesting. I had to have a catheter many times. They said (according to S) they don’t like to leave it in because you are more likely to get an infection. But the visions that came with it…it’s hard to explain. One of them I saw women surrounding me in ceremonial garments. I was the center of some ceremony. It was strange, but it didn’t scare me, I felt like I was in a place of honor. Other times I did not have good visions. I I wasn’t sure what was going on, I felt violated. I still do. I had no say in what was happening, how can you not feel violated when people are sticking things up your urethra when you are out of it?

There was also a time that I thought there were two Stuarts. One was on one side of the bed, the other was on the other side. It was so strange. I told him I had to smell him to make sure he was the right Stuart. I got very agitated by the second Stuart, he didn’t smell right and was very jealous of the real S, but I had the right one there so I wasn’t scared. S told me I talked about gnomes a lot, that’s interesting, but I don’t remember it.

I’m told when I was hurting so badly I called out for my mother. She died 29 years ago. I still miss her so much. I do always wish she was here to help me through this, help us through this. I’m just so very grateful I have Stuart, and I have such good memories of my mother. I was thinking how hard my life has been, so very hard. How could I be so unlucky? Then I realized I’m one of the most lucky people in the world! I have an amazing husband to help me through this. How could I be unlucky?

I’m getting way off track, as usual, at least that was a good thing….. so let’s get back to this traumatic hospital experience.

First Discharge attempt:

The day after the ketamine was stopped I was set to go home. We were all packed and ready. I was getting in the wheelchair and then said, I don’t think I should leave with so much abdominal pain. The nurse from hell tried to force the issue, then I had a seizure. Other nurses and a doctor came in and said I wasn’t going anywhere. I don’t remember any of this. None of it. How could I have felt like I was ready to go home, with the only symptom abdominal pain, and not remember any of it? After the seizure S told them that the seizures happen when I’m under an extreme amount of stress. It hurts me that I’m having psychogenic seizures again.

Being forced to leave:

The next day they gave me Dilaudin to help with the pain. They finally listened to Stuart. Shortly after the nurse came in with my discharge papers. Stuart said he wanted for us to stay for another 30 minutes to make sure I didn’t have a reaction to the medication. We thought that was all there was to it. I was eating my lunch when suddenly the nurse from hell and an entourage of other nurses and a HUGE security guard came in to escort us out. They had “patient belongings” bags and were ready to throw my things in and forcefully make me leave. I was very concerned and agitated. I kept saying I didn’t understand, why couldn’t I finish my lunch? Why was this happening. No one would answer me, so I got a little loud, I didn’t scream or anything, I just wanted attention since I can’t hear I thought maybe I was missing something. S was busy getting our things in the suitcase so he couldn’t be that help, I doubt they would have said much for him to translate anyway. When I raised my voice the security guard came over to my bed and loomed over me, I shouted to him “I’m deaf and do not understand” it was obvious he didn’t believe me. The nurse from hell tried to touch me to get me in the wheelchair, I did forcefully tell her “Do not touch me”. I got in the chair myself. I did keep saying that I didn’t understand. While we were waiting for the car….yes they all waited to make sure we left….I turned to that nurse, she was the closest person to me…and said I wanted to see who was in charge. She said she was….she was the charge nurse, but she was far from who would be in charge. I told her I wanted to know in writing why I was being treated that way. She said, “it’s been noted”. I asked for her name and she wouldn’t give it to me. I also felt like they put people between me and Stuart so we couldn’t bond together. They rushed me out so fast I didn’t have my mask, and the charge nurse evidently didn’t have hers on since I could read her lips. I am sure that the whole process lasted more than 30 minutes, if you include the time before they came in. Why did this happen? Bullies, that’s all they are….Bullies.

I will NEVER be treated like that again! I will refuse to leave until I at least get the people’s names. We made a formal complaint, I’m sure nothing will come of it, but they can’t find out what the security guard’s name is. I don’t want anything like this to happen to anyone else.

Another strange thing, I was told that a doctor came by that morning and I told her I was ready to go home. She’s the one who ordered the Dilaudin, they finally listened to Stuart, then said I could leave. She’s my headache doctor’s partner, so I do trust her. But I don’t remember any of that. I really don’t remember anything until I was eating lunch. It’s like my brain shut down because of the pain….or the ketamine really hit me hard….I don’t know. Stuart is concerned that I don’t remember the last two days after I was off ketamine and was ready to leave. I do remember every bit of those people forcing us to leave. They didn’t even ask, they didn’t come in and say that they couldn’t allow me to stay any longer….for whatever reason…they just came in and started to pack up my stuff and forced me out.

I’m now having nightmares. It’s hard for me when I go to bed, even when I’m not sleeping, I can feel that security guard looming over me. I can feel the hate in his and the nurse from hell’s eyes This is one of the most traumatic things that have ever happened to me. I’m very afraid the seizures will become a regular occurrence again.

I’m trying so very hard to not think about the past, I know it’s over and I’m safe….but ,my body doesn’t seem to know it, it is fighting hard. I’ve lost all hope. I keep telling myself that’s not true, but it is. I was certain this treatment would help. And it did the first time, until I fell. I was outside in the sun without my hat! I had so much relief. I did feel like it was helping my migraines at first, but the trauma those people caused, I believe that negated every good that the ketamine did. Now what? The only other thing I know of is lidocaine infusions, but I don’t know if I can go back in that hospital. I’m also jumping the gun, who knows what else my doctor has up her sleeve.

I’m trying so hard to be mindful. S keeps trying to get me to stop and really breathe. That has always helped before, and it really helps him. But right now, it isn’t very helpful.

More Horror:

The night after the ER visit I started having akathesia, this happened last time too, so I was prepared with medications from my psychiatrist here. she helped before. But it didn’t work. I was pacing so much! I was anxious. I couldn’t be quiet. The only relief I seemed to get was in the bathtub. I took 7 baths in less than 18 hours. Crazy huh? My psychiatrist increased the dosage on the meds and I finally started getting back to normal. I was to take them for 3 days, when I tried to stop them, the akathisia and extreme agitation started again. So I’ve been on a lower dose since then. I sure did sleep well on those meds, too bad I don’t sleep like that all the time.

I think that’s all….I hope that’s all.

I do have another major stressor going on right now, but it’s worrying about someone else, not anything about me. Nothing I have any control over. Is there anything I have control over? Not my life, that’s for sure.

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.

Round two anyone?

On By WendyIn Chronic Illness, Headaches, Migraines7 Comments

Not edited, stream of thought:

I’ve been away for quite some time, I hope no one has missed me too much. Or maybe I do, I dunno, I kinda like the idea that someone out there missed me….oh that sounds weird, like I think no one cares, I know people care I’m being weird. Speaking of weird…

After the amazing results from the Ketamine treatment I had in early may, it ended when I had two falls and a concussion. Yikes!

Since May 31st I’ve, once again, had a constant migraine. This one is very high all the time. I’ve had no respite at all.

,

Okay, did they change the way you post photos into WordPress…OMG that was hard and now I can’t move it!…..anyway, this is what happened: Damn I look old, and really messed up. Whew that had to hurt…oh wait I know it hurt, it happened to ME! So surreal.

I went for a walk, and fell, flat on my face, didn’t even get my hands out to brace myself. It felt as if someone had pushed me from behind. (uh oh…Meniere’s drop attack..damn) Stuart and his father were in a restaurant near by (their conversation got boring, hence the walk) I came back to the restaurant and every head turned to me with, what I can only describe as, fear and fasciation. I walked over to our table and Dad looked white, Stuart turned and saw me and jumped to his feet very alarmed. The waitstaff swooped me up and took me to the bathroom to try and clean me up some. Then I saw myself. Blood covered my face, I shouldn’t have been surprised, I had tried to call Stuart when I fell, but smart phones don’t work when they have blood on them. My lip was severely swollen and there was a big gash in my forehead. They tried to clean me up the best they could, but they couldn’t fix it. I ended up in the ER, luckily one that wasn’t busy. They cleaned me up better and glued my head back together. My tooth tried to come through my lip, but since it didn’t go all the way through there isn’t much they can do, getting stitches there has too much of an infection risk. It’s all okay now, I still have a ridge inside my lip, probably a scar I’ll always have, and I have a cute little scar on my forehead. Nothing broken…not even my glasses…which is really weird, they didn’t even fall off or get very scratched. Really, Really,Weird. I had a scrape on my leg, didn’t bleed really, yet I can still see it….again…weird.

I saw my doctor week JULY 6TH!! and I’ll be going back into the hospital for another round of Ketamine soon. (If insurance ever gets their act together!) I’m also getting trigger point injections where the concussion was, and nerve blocks in the occipital region on July 27th. She also increased preventative meds that I’m already on, and discontinued some acute medications because they weren’t working. I feel like a zombie every morning when I take my meds, yet the pain is still very real! I’m also getting a migraine cocktail infusion every week now. It doesn’t last long, and it’s so hard to find a vein on me I have questioned if it’s worth it, but she just changed the orders up on that too, so we’ll see. One person is wonderful at getting my veins, another hurts like H and I told him to stop, and another is decent, but it still hurts and I always have a big bruise later. As long as I get a few hours of relief, I’ll continue to do it.

Just because I’m going through all this doesn’t mean I’m not here for my friends. Anytime anyone needs to talk, reach out. It makes me feel like people still think I’m worthy, instead of someone you don’t “bother” because they are ill. I remember family members doing that to my mom, and it broke her heart. I’m still a person, I can still be a friend. I might not be able to respond immediately, but I will. I don’t like feeling like I’m not a good friend anymore. I know there are a few people who will think I’m talking to them directly, but I’m not, this is aimed at anyone who feels they can’t “bother” me. I do apologize for not reaching out more. Emailing…texting…I haven’t been very good at that. I’ll try and be better. I really do value my friendships.

If there’s anyone out there who has had, is having, or going to have ketamine for their migraines, I’d like to hear from you. I’d like to compare notes at the very least.

Right now I’m in a Spravato treatment. You may remember that Spravato is a treatment for major depression disorder, and it’s esketamine. Interesting all the things this “street” drug (or part of it) can do.

I’ll also try and write more here, it does help me, whey don’t I do it? I dunno. I’m basically staying in the dark, watching mind numbing TV (the brightness has been turned down). I’m trying to do more, even if it is a struggle…pushing myself through…way past the point of using all my spoons.

Yes, you can have a migraine for over 2 years.

On By WendyIn Chronic Illness7 Comments

I haven’t been here in a long time, the pain hasn’t allowed it. It was much easier to blog when I was just dealing with Meniere’s, at least I had breaks. Yes, I had migraines then, but not like this. Nothing like this. And I’m not dismissing Meniere’s, it has been hell. I’m so very grateful that it’s soooo much better even the recent spell I had was nothing like before. I rarely have full rotational vertigo. I do get the vertigo that feels like you are moving and you aren’t, kind of like walking on a boat, but there’s no boat, no water. Occasionally I’ll get the drops, as I call it; it feels as if I stepped into an open elevator shaft and just keep falling. Luckily, that doesn’t last too long. I just hug the floor and keep chanting “I’m not falling”.

I veered off course there a bit. This post was supposed to be an update on my migraine situation, and just life in general.

Migraines have been extremely high. My number scale has completely changed, I didn’t realize that migraine pain could get as high as it has. I also don’t think I really understood fatigue until recently. I am so tired all the time. I fall asleep during the day. When I walk, I feel like I have to push through the air, as if the air was partially solid. That sounds weird, but that’s what it’s like. I fought it for a while, but lately I just sleep when I can; if I’m sleeping I’m not aware of the pain (most of the time).

My doctor called in a “migraine cocktail”, I have to go to an infusion clinic to get it on Friday. It can’t be soon enough for me. I don’t know what’s in it, I guess I’ll find out once I’m there. Maybe it will work, I’ve had migraine cocktails before, but different places combine different drugs and call it the same thing. If it doesn’t work, I hope they can admit me and do something to break this cycle, it’s been over two years now. If it breaks then maybe the preventatives will work, I don’t think they can really do their job when you don’t have a break. Maybe that’s not true, but it’s my belief.

Dad is doing better. I don’t know it I wrote about the bleed he had in his stomach. They put him on blood thinners because of his heart, then he had the bleed and ended up in the hospital for about a week. He still looks pale to me, he is still anemic. He hasn’t eaten red meat in many years, not the doctors told him to eat it. It’s quite funny to me, he stopped eating it because of his heart, not he needs to eat it. If he’d eat spinach and legumes he’d get more iron than eating red meat, but who listens to me? Next week he gets a device called The Watchman inserted in his heart, it stops blood clots from forming in the heart so he can get off blood thinners.

Well the computer is getting to me, so I will close for now.

I want to apologize to everyone who has emailed or texted me, I just haven’t felt up to answering a lot of things. I also haven’t felt up to looking at and reading blogs, some I have read, but I haven’t been able to comment. Being on the computer for long is crippling.

So I will sign off for now.

Hopefully I can come back soon.

Christmas + Chronic Illness + COVID = X

On By WendyIn Christmas, Chronic Illness, Chronic Pain6 Comments

After being told, erroneously, that this would be my father-in-law’s last Christmas we decided to brave things and try to create as many memories with him as possible. That included having family gatherings.

We all got together for Thanksgiving, during which I found out that 3 people in that group are not vaccinated. I tried to be as careful as I could, but I felt the whole day was irresponsible, and scary.

Now we know that what’s wrong with Dad’s heart will most likely not shorten his life span, we aren’t feeling the need to get us all together again. At first I thought we still should, after all he’s 84, who knows….who knows about any of us really. But now I’m thinking, do we want our memories to be about all of us having COVID? I don’t think so.

I just got back from my physical and my doctor told me that we need to celebrate the best we can, and still be cautious. He told me to stay away from unvaccinated people, especially indoors. The hospitals here are at near capacity. It’s bad.

So a family Christmas is out this year, and I’m okay with that.

I saw a show the other day where a child was trying to share what Christmas meant to an alien. (Dreamworks Home For the Holidays on Netflix) As the story went on the alien tried to share his joy with his fellow aliens, but they didn’t get it and they were really just making a big mess. (much like all the garbage created by Christmas now) Finally the girl realized, Christmas isn’t about all the things, or family, or gatherings, or any of that….Christmas is a feeling. It’s the feeling of magic, kindness, giving, love, joy…..it’s the feeling of having goodness you can believe in.

I like that.

There are so many celebrations this time of year, I kind of put them all under the umbrella of Christmas, it seems others do too.

I want to send glad tidings to you all, no matter how you celebrate the holidays…or don’t, that’s okay too.

Have the best celebrations you can, while still being careful out there.

This year, we’ll do much the same as we always do.

Rainbow lights strung on a wall in a tree shape, with a star on top.

We have our unconventional tree, that includes everyone. (that’s why it has a rainbow glow) We will still watch It’s a Wonderful Life on Christmas Eve while eating Chinese take-out. Still putting together our Peanuts Christmas puzzle and build our various Lego Christmas things (train, tree, Santa….). That should keep us busy! Maybe I’ll even make cookies!

When you are celebrating the holidays remember, it’s not about getting together with family, the gatherings, or any of the preconceived notions that have been pushed down our throats. (Could there possibly be any more romantic Christmas shows?) The holidays are about the feelings. They are about caring for each other, those you know and those you don’t. It’s about giving, not receiving…but I admit receiving that magic is pretty darn special. Let the magic shine in you. The other day while S was working I closed myself off in the studio, played Christmas music and sang at the top of my lungs! I worked on little art projects and just had a magical day, all by myself. It was actually the most magical feeling. Unfortunately I think I’ll have Christmas music stuck in my head until July! Oy Vey!

Please remember that everyone is going through something we don’t see, be kind, reach out if needed.

The holidays is a time when so many are lonely, and depressed. They can’t feel the magic, they can only see how they are left out of it all. Some are sick, poor, or simply alone. If you are feeling this way, please reach out. If you notice anyone feeling this way, or suspect it, reach out. Sometimes simply letting someone know you care and they aren’t alone is enough to help them through this tough time.

Merry Christmas to all!! And to all a Good Night!!

**Little Mini-Me update….the migraine is still here. I had my physical yesterday and my bloodwork looks great! My BP is great! I still hate having High BP disorder in my records, but oh well, at least it seems to be down now….maybe. I saw the retina specialist last week and he said my BP had to have spiked sometime since I saw him last because the vein leaked again. I noticed my vision was worse, but thought it was just that it wasn’t going to get better, not that it was actually worse…that didn’t make much sense did it? So I got another shot in my eye, I’m seeing better! Hope it stays that way, I go back in a few months. I saw the dentist this week, it had been a while…before lockdown….things weren’t horrible, but not as great as I would have liked. I need to see a TMJ specialist because I’m grinding my teeth and she thinks it might be contributing to my migraines. I also have a Tilt Table test set up for the 28th, this is at the clinic in Phoenix. I realize this is a stream of information, I hope it makes sense. Oh, found out yesterday that my therapist is retiring in March. I’m sad about that. I feel like I’m losing a good friend.

I missed you too much, going to the headache clinic.

On By WendyIn Chronic Illness, Headaches, Migraines13 Comments

Okay, so I couldn’t stay away.

I don’t know how much I will be posting, but I hope you will bare with me when I’m silent for long stretches. Such is the live with chronic illnesses and pain.

If you’d like to know more about what’s been going on with me here’s where I’ve been, sporadically, https://dizzychickblog.wordpress.com/

I have great news! At least I hope it is.

Headache guide by W. Holcombe

I’m leaving Saturday for the Diamond Headache Clinic in Chicago. They are very well known for helping headache patients who are complicated. I had a virtual appointment with Dr. Merle Diamond, she is the daughter of the founder. She was very encouraging. She said we’ll start with a cocktail infusion and if that doesn’t work, she will try something else. I have no idea when I’ll be home. The average stay is 7-10 days, it could be a little less, or more.

When I had my virtual visit with Dr. Diamond she asked when I wanted to come and I said “as soon as possible”, expecting to have to wait for a long time, she said “how about tomorrow?”. Oh my! She really wanted to get me in there fast to get started helping. Unfortunately, I couldn’t go immediately, I have some other appointments that I had to take care of before leaving. Like getting more trigger point injections, I sure don’t want to have the severe nerve pain while I’m there.

They do much more than just medication treatments, I’ll also be working on mindfulness relaxation, nutrition (I have to eat a low tyramine diet while there, and can have no outside food), and other modalities if they think it’s necessary. For example they also do physical therapy, massage…ect.

One more thing, Stuart gets to stay with me. They have the room set up for a companion. So we don’t even have to pay for a hotel room. I couldn’t get any luckier about this trip. Oh, yes I could, since I’ve already hit my maximum out of pocket this isn’t going to cost us anything. Just the plane tickets and a hotel for extra days we are hoping we can spend so we can visit friends out there. And hopefully visit the Art Institute of Chicago, I’ve always wanted to go there. If they are actually open to visitors with the increase of covid cases. Hmmm, will I feel comfortable going there? Oh my! I just thought of that.

I’m excited to go, and also way stressed out . There is so much to do this week to get ready. Luckily Stuart is very good at planning. He has lists for so much. I am a list maker too, but not to the extent he is. It makes me laugh sometimes.

More news about me. I had a urine test to check on my adrenal function and we found that the hormone norepinephrine (noradrenaline) is high. I then had to do a 24 hour urine test, I turned it in yesterday. When I turned it in the lady said, “This is just 24 hours?” Hahaha, I pee a lot! The test will determine if I have a tumor. Tumors on your adrenals are normally benign so I’m not worried about it. Of course if I have one they will remove it. There is also a possibility that it’s high simply because I’ve been under so much stress, especially from pain, for so long I’m stuck in the fight or flight mode. And it could be caused by a medication I’ve been on, (Fetzima) that I’m tapering off of now. If so the relaxation techniques I’m going to learn will help, and I’ll probably need medication at least for a while. This could explain the increase in my symptoms, the sudden high blood pressure, increased heart rate, high anxiety, prolonged migraine….among other things. I’m actually hoping that this is the reason., it could change everything.

I’m going to try to keep a diary of everything that happens at the headache clinic to share here. I hope it will be helpful to some people.

My headache specialist here, that I’m not fond of, actually suggested I go to a headache clinic because she is out of options, and this migraine has been going on way too long. She suggested Diamond or Jefferson, but when I messaged her to tell her I was going, she didn’t even respond. What is wrong with this woman? And why did it take her so long to suggest this? I’m so glad I’m getting a new doctor in November.

I have a virtual appointment with my psychiatrist in about an hour so she can see that I’m still doing well at the lower dose of Fetzima, so I can take it down even more. This is a very slow taper, it’s kind of frustrating, I really want to get off this as soon as possible to see if it may be the culprit. So I’m off to get ready for that, then I need to do more to get ready for the trip. So much to do and my symptoms are very high lately so it’s very hard to get things done. It’s amazing how we can push through so much. Plus, the anxiety about all this is driving me crazy. I know it’s mostly from the norepinephrine, but it doesn’t make it easier. I do so wish I could drive so I could get some things done while Stuart is working. This is really going to wear him out.

Oh, we are so lucky that our pet sitter is available to come stay with out babies during our trip. So he’s not only pet sitting, he’s house sitting. And he’s going to clean! He said he wants us to come back to a clean home. He’s going to get a big tip from me!

I hope you are as happy to be back here at Picnic With Ants as much as I am. I put so much into this site, I just couldn’t give up on it.

How are you all doing? Have you ever had to go to a specialty clinic? I’d love to hear about it.

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.

Doctor of Pain

On By WendyIn Chronic Illness15 Comments
PAIN drawing by W. Holcombe

We have a little joke in our house about how the Pain Clinic sounds like it’s a place where you are going to get pain, a little S&M anyone? It should be called the Pain Relief Clinic don’t you think?

My migraine doctor (a neurologist that specializes in headache disorders) said she was sending me to a pain specialist for my neck pain; you can understand my confusion when I ended up at a Spine and Sports Medicine Center. I’ve been to a sports medicine center before and it was filled with lots of sweaty people doing exercises and recovering from surgery. To say I was a bit wary of this appointment was an understatement.

The confusion ended once I talked to the doctor. This may be called a spine and sports medicine center, but it’s not like any sports medicine center I’ve been to before. Stuart actually said he wondered if they used that name because of the negative connotation association with pain clinics. I think it may also be because they mostly treat people with spine issues. But yeah, this was different.

They took a thorough history, that was very hard for me to go through, I kept breaking down when I was filling out the paperwork as I was realizing just how long I’ve been living in pain.

These are the things, that I know of, that are causing pain to my head, neck, and back area (this does not include pain in other areas). In 1973, at age 10, I broke my right arm and found out I had a bone tumor, that would end up with 5 more breaks, and a major surgery including a bone graft in 1978, leaving me with my right arm shorter than the left and recurring pain. May of 1974 I had my first migraine, two months later I woke with a headache that never went away. In 1991 I fractured my 7th cervical vertebra, and had a severe contusion to the back of my head (I now have arthritis in my neck). In 2016 I had akathesia as a side effect from a medication that has left lasting effects to my back. I hope that doesn’t sound like I’m whining, really I’m not, it’s just the way it is.

After we talked about all my symptoms, the different types of pain, the numbness down my arm… and after we went through all the things I’ve tried to relieve my pain….PT, chiropractic, supplements, Botox, medications, acupuncture, massage….and how little they worked we discussed my next option, injections.

The first injection I’ll be getting is on Monday, it’s a corticosteroid injection to the right and between the C-7 and T-1 vertebra to address the nerves that run down my right arm. Every day I wake up with my right arm in severe pain and it has electrical sensations running down it, and my hand is weak. They decided to address that first. I’m very nervous about getting any steroid injections because of the risk of Avascular Necrosis. I had AVN in my left hip causing me to get a hip replacement, they believe it was caused from steroids. You can read more about that here. She said that most of the injections in the future would not be steroids, so hopefully this won’t do any harm. But what choice do I have? My quality of life is greatly diminished right now.

She sent me home with a prescription for a muscle relaxant and orders for an x-ray. Now I’m just waiting for Monday. I’m slightly nervous about this only because I was asked if I wanted sedation. Why would someone need sedation for this? They give you a local before the main injection. I’ve had major injections in my hips, and I’ve had lumbar punctures and patches in my spinal cord, I was never offered sedation for those. Am I wrong about how bad this is going to be? I had an injection for pain in my neck when I fractured it many years ago, I didn’t have sedation then. I was given something to calm me and it made things a little hard actually because I couldn’t stop laughing.

Have any of you had these kind of injections? What was your experience?