Category: Chronic Illness

One Huge Stress Relieved

On By WendyIn Chronic Illness11 Comments

I haven’t mentioned it here, but a few months ago I received a letter and questionnaire from the Social Security Administration stating that they are reviewing my medical condition. If they decide to go to the next step I would have to see a doctor of their choosing to keep my benefits.

It completely freaked my shit out.

This happened right after I bought my car and I’d been feeling as if I were in a remission of sorts for the past 9 months or so. The vertigo had not hit hard in close to a year and when it did I had warning signs so I knew when it was going to happen, so driving was once again possible. I was able to clean my house, go on short grocery shopping trips alone, go to some appointments by myself….I felt a new sense of independence. (as long as I wasn’t having debilitating migraines but that’s not what I was found disabled for) We had just recently moved to Tucson and I had a number of stressors that came with that move, add on this worry and I crashed! Not only did I crash physically, I crashed mentally, and I wasn’t even sure if I should get better if that meant I’d loose my disability and Medicare.

This past month I simply stopped thinking about it, well mostly, and I focused on getting back to a good normal level for me. I want to get into that remission state again, but if that doesn’t happen, I’m hoping for a better normal than I have right now, and I think I’m headed that way. I’d like to say I’d just accept how I am and be okay with it if that’s how it turned out, but I think I’d have to go through the whole process of grieving again to get there. Mindfulness is hard, that’s why we must be gentle with ourselves.

Do I blame the Social Security Administration for my flare, in part, yes! I believe this flare was caused by an accumulation of the stress I’ve been under over the past many months. The review of my disability benefits pushed that stress even higher. I felt like I shouldn’t be better, that I might have to prove I’m still as sick as I was at the time of my hearing to a doctor of their choosing. How is that fair?

I won’t defend why I deserve disability assistance here, I did that to a judge and a room full of people who were all trying to find a reason that I was not disabled. This post is simply to point out just how broken this system is.

I get letters saying they have good news that I can possibly get training to work and I may still be able to keep my benefits after I am employed. That sounds great doesn’t it? But then when I took the time to read it in it’s entirety I found out that if I make over a certain amount I would not only get my benefits cut I would also lose Medicare even if I could not get healthcare. I’d also have to see that doctor they chose to make sure I’m still disabled before I could start training for a job. There’s some great incentive for people to actually do that isn’t it? I’d love to try to learn something new and work some, but only if I could keep my healthcare, and I do not want to see their doctor first. That’s just scary. I should not have to do that over and over. If they want to review my case, they should ask MY doctor. That is the only voice that should be allowed to say if my condition has changed. Not a doctor of their choosing.

When I’m not flaring I don’t feel as ill as I did during the time I applied for SSDI, however, there is no way I could hold down a job. Not that I don’t want to. I’d love to be able to work. My hearing, or lack there of, and my physical limitations do not allow me to hold a job of any sort that I am at all qualified for, or any other that I know of. Now, why do I feel I need to defend myself even to you, my friends who know what my life is like, and know that holding a job would put me at risk of always being in a flare? Why do I feel ashamed that I have to depend on the government to help me? For anyone to help me? I believe working helped stabilize my moods. When my mind and body are more engaged then my mental health is more stable. Of course, I’d like to work again, who wouldn’t given the circumstances?

I do wish I’d seen this; 10 Facts About Disability Review, before I got so very stressed out. I would have still been stressed, but not quite as much.

A few days ago I received a 2nd letter saying they were not going to further review my case. It’s all good. At least for now, they could decide to review it again, but for now, everything is as it should be. I just forgot to mention that little bit in the original post. duh.

I’d love to know….Are you on disability? Has your case been reviewed? What happened?

Thankful Week 5 – #TToT

On By WendyIn Chronic Illness, Gratitude, Thankful7 Comments

I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.

10 things I’m thankful for the 5th week of 2019 are:

  1. Possibilities – Just as I started to write this post I received a message that I may be able to see a specialist in San Diego I’ve been wanting to see for a long time. A special thank you K for making this possibility happen.
  2. My new therapist – I saw her for the first time on Wednesday and if first visits are a clue as to how things are going to go, I’m going to love going through this process with her.
  3. Vertigo that doesn’t last long – Last night I bent over and the world started to spin, I sat down and waited but it kept going. Stuart helped me to my chair and shortly afterward the spinning stopped. Yay! I still felt like I was moving for a while after, but the visual spins had stopped and that’s something to really be thankful for! Plus the meds gave me a good night’s sleep. 😉
  4. My slow cooker – Organic chickens were on sale so we bought 2 and I was able to cut one up and use some of the bones to make stock in the slow cooker. For the other, I roasted the whole bird in the slow cooker, comes out like rotisserie chicken, so good, so easy, and something to eat on for days. Something to really be grateful for when I’m not feeling my best.
  5. Imodium – need I say more? I ate way too many grapes and the next day I paid the price. Thank goodness there’s an over the counter drug to help stop me from running to the bathroom all day. ew.
  6. Shoe strings – I have a pair of yellow high-top Converse that I wore during the reception of my wedding, almost 15 years ago. For years I haven’t had shoe strings for them. I don’t remember what happened to the first pair, the shoes look almost new, so I can’t imagine they just wore out. hmmm? I’ve bought numerous shoe strings that were supposed to fit and they were always either too short or way too long. Well this week I was wearing another pair of sneakers and the strings were wayyyyy too long, so I thought I’d try them in my “wedding” shoes….voila! I can now where my yellow high-tops with joy!
  7. Dinner date set – Finally we have a date set for a dinner party we are throwing at our house. This dinner was originally supposed to be Christmas dinner on December 22nd, it has been rescheduled many times, for different reasons, mostly because of me. I am determined that no matter what it will go on this time! And celebrate my husband’s birthday at the same time!
  8. Another possibility – My therapist recommended me for a study about chronic pain that I don’t qualify for…darn it…but I decided to ask some questions and the group gave me some good information. Now I have the name of a massage therapist who treats chronic pain, he is actually helping with the study, and I have a chronic pain support group in the area I can check out. Good things happen sometimes if you just ask.
  9. Rover.com – we have been needing to find a pet sitter in the area, not that we are going on a trip soon, but if something comes up we need to have a sitter all set up, and our little girl is very picky about who takes care of her. After getting in touch with at least 5 sitters through Rover and meeting up with 3 so far, we know we’ve found at least one that Kiki will adore, and she just lives around the corner! I’m so thankful that we found her and so thankful there is a site like Rover that makes searching for a pet sitter so much easier.
  10. My heating pad – Something as simple as a heating pad, which I’m using right now, can bring such comfort to me. I’m so very thankful that the heat relieves part of the pain in my back and hip recently.

That’s my 10 for the week.

Extra – I’m thankful my Lantanas are blooming. So are the butterflies.

How about you? What are you thankful for this week?

My Doctor Treats Me Different – Mental Health Stigma

On By WendyIn Bipolar, Bipolar, Chronic Illness13 Comments
image by pixabay.com

For the first time since my diagnosis in 1996 I’ve felt that I’ve been treated completely differently because of my mental illness. Perhaps it was because I mostly stable for so long and my few people have ever seen me have an episode, but this came from my doctor.

Since we moved to Tucson 8 months ago I had to get a new PCP (Primary Care Physician), I initially wasn’t sure about her, she seemed a little too friendly, and one of the first things she said was that she wouldn’t write a prescription for diazipam. (I didn’t ask, I’d get that from my ENT anyway), but I gave her a chance. I admit I went in there not expecting much so I felt that’s what I got. The second visit was much better. Every time I’ve seen her she hugged me, until I told her about my mixed mania episode. Now things are different.

I saw her on Friday for back pain. I felt like she dismissed things I said. I tried to talk about the back pain and she asked what I wanted to do about it. I said, “fix it”. “How do you want to do that?” I jokingly said, “I want you to fix it.” and I laughted. She said, “I can’t do that”, in a very abrupt way. She immediately said she would refer me to PT. I tried to say that I wasn’t sure it was muscular, I was concerned it may be arthritis. “No. You need PT”. She normally talks well so I can understand and is friendly, on Friday I had to turn my cochlear implants DOWN because she was so LOUD. She didn’t even want to look at my back, when I said where it was, she said she thought it was my lower back….”well bitch if you had asked you’d know!”, I thought to myself. She touched me and said, “I expected it to be tighter”, in a much lower voice to my husband. I tried to tell her that it feels different, but she dismissed me. I needed to go to PT. Fine, I’ll go to PT and I’ll find a new PCP! (you’d think she thought I was seeking drugs but I’m allergic to opioids, and she knows that, so WTF? I just wanted a discussion and maybe an xray)

I may have made the grave mistake of telling her about my episode, but when my drug list started to change, that would be a pretty obvious clue things were changing. I also mentioned I had back pain as a side effect from akathesia due to a side effect form Latuda 2 years prior, I should not have said that…..WAIT!……………

What am I saying?? I should have been able to say all of that!! My general doctor should be able to be aware of my mental health issues and not start treating me like I’m not able to think for myself.

I will be firing her soon and I will make sure that she and the office know why I am doing so. This is crazy, I’m not!

Thankful Tuesday #TToT 1.29.19

On By WendyIn Chronic Illness, Gratitude4 Comments

I enjoyed participating in the Ten Things of Thankful challenge last week I thought I’d try to make it an ongoing post.

My week has been filled with ups and downs, but there are always things to be thankful for:

  1. The first thing I’m thankful for is that my ultrasound I had last week showed that the hydronephrosis is clearing on it’s own. A severe UTI can really cause some major issues, I was shocked. Now I’m thrilled it’s all working out with no further treatment. (you can read more about all of this at these 2 post: My Plumbing Doesn’t work and Unblocked!
  2. My cousin from NC was able to drop by for an impromptu visit while in town for work. That was super cool! I’ve been a little homesick and that made things much better.
  3. The weather has been awesome this week. Sitting in the sun soaking up some Vitamin D has been a regular event. I’m so thankful for sunshine in the winter. (helps that I live in the desert)
  4. Our fireplace works. I know I just said how amazing the weather is but we had a cold night and it was nice to have a fire built to take the chill off. Here in Tucson the nights can dip in the 30’sF then the days can hit in the 70’sF. 30F nights are not that common though and most days are in the 60’sF.
  5. I’m grateful I found a new therapist, I see her for the fist time tomorrow. Wish me luck. We’ve emailed a bit so I feel comfortable going in already.
  6. As with every week, I’m grateful for my husband. He has been putting in some long hours at work. I’ve been in pain this week and I haven’t been able to do much, Stuart has done so much, and takes care of me too.
  7. I’m grateful we have a TV, when I’m laid up it’s a comfort to just sit and veg in front of the idiot box. 🙂
  8. For running water. I really thought about this this week. As I mentioned I live in the desert, I feel it is such a luxury to have water all the time. It makes me want to conserve it as much as possible.
  9. I found out we can recycle more than we thought we could. Yay! Less garbage. Also, the sanitation department asks that we simply throw our food scraps in the trash can and rinse it out a little instead of putting it in bags, much less plastic in the landfill. This one is a bit harder to do though, but we are going to try.
  10. My friends. One sent me an awesome surprise! One is now able to text me almost everyday, that makes it so much easier to keep up with each other. One is my chosen sister. One keeps me sane and teaches me so much every time we talk. All the wonderful friends who check on me and comment on my blog, and simply make me feel loved. I hope I do the same for you.

What are you thankful for this week?

If you’d like to particiapate in TToT here’s what you do:

If you are interested in participating here’s the link to it. Ten Things of Thankful 
“The blog hop opens every Friday morning at 1:00 a.m. Mountain time, and closes the following Tuesday at 11:55 p.m. Mountain time.”

“Every week, bloggers from all over the world gather together here online to share with each other the things that they have been thankful for during the past week. Although the number ten is in the title, that is more of a suggestion than a hard and fast rule.”

Unblocked!!

On By WendyIn Chronic Illness14 Comments

I’m happy to report that my ultrasound showed that my ureter (my kidney plumbing that was not working right) is going back to normal and I will be fine without further action, no more hydronephrosis!! Yay! Happy Dance!! If you missed the post about all of this, you can find it here: My Plumbing Doesn’t Work

However, they found that I have a kidney stone on both sides. Bummer. They are small enough to pass, but they will probably hurt….a lot. Bigger bummer. I now have to do a 24 hour urine collection. Yes, I have to pee in a “hat”, (that is actually what they call the collection container that fits in the toilet) then I put it in a jug and keep it in my refrigerator the whole time. It’s not so much the eww factor, my refrigerator is small! and the jug is a 2 liter. Since I drink so much water I’ve been given 2 jugs, just in case. That was kinda funny. I actually hope I do have to use both just to shock the ladies in the lab, they were very surprised when they were told to give me 2! LOL. But there will be nothing in the refrigerator to eat, just pee. Okay a little Eww factor. When I take the urine back, I have to get labs done, they are checking for risk factors for kidney stones (what I eat, drink, medications, genes….).

My Urine Collection bottle and “hat”

I’ll keep posting as we find out more, but I don’t have another appointment with her until April. That’s a very good sign that I’m doing well.

Feeling Old

On By WendyIn Chronic Illness35 Comments

I just want to talk about something kind of silly today.

Wedding day, September 3, 2004

I was looking at my wedding pictures the other day and realized, I don’t look like that any more. It it will be 15 years in September, so go figure I don’t look the same, but golly, I sure was disappointed. Does the gray hair really age me? I actually like my gray, I think I have pretty streaks, I think it’s kinda cool. Looking close in the mirror at the new wrinkles is not such a welcome site. Suddenly, when I wasn’t looking, I got older.

Photo taken June 20, 2018
A good hair day….a little wet.

I never thought it would happen but I’m completely out of touch with today’s main stream society; by that I mean, fashion, popular TV, movies, and music. I was watching TV last night and there were so many commercials in which I had no idea who the people were. My TV watching normally includes cooking shows, cartoons, and British mysteries…with a little science fiction mixed in, last night we were watching The Good Place (not live, on DVR). I know very, very little about the new music and their artist, and most of the newer actors. Some I know by site, but I don’t know their names. Some I’ve heard of, but I don’t know anything they’ve done. Okay, the music is understandable since I can’t hear most music anymore, but it still makes me feel so out of touch. Even before I lost my hearing I wasn’t a fan of a lot of rap music. I often feel like it’s is yelling at me, if I wanted to hear someone yelling at me all the time, I’d have lived with my father.

Fashion these days? I simply do not understand leggings being used as pants. I once saw a billboard that said, “Leggings Are Not Pants”. They were advertising a store that sells office work clothes but, I just squealed! Exactly! I think they have their place, under a long shirt or tunic (that’s how I wear them), at the gym…but wearing them all the time out in public? I don’t think it looks good on anyone. I do wear nice yoga pants out in public, but they look like normal pants. Well, not normal pants that you see now a days, they are all “skinny”. Why does everyone desire to wear something called “skinny”? I think of “skinny” as someone who is underweight, no one needs to be skinny, sometimes it’s not a choice, but skinny is not something one should strive for, in my opinion,. Okay, I admit I tried on a pair of skinny jeans, eww, just ewww. Yeah, I’m not skinny and that’s okay. I’d rather be comfortable and look good. I probably just look like an old lady now, but I think that’s better than looking like my clothes are spray painted on.

Taken April 2018
Leggings my way.

It’s also very evident that I’m older because I found myself saying, “In my day….”, and calling a 30+ year old a kid. Also because I don’t have a tattoo. I like many that I see, but I do get a bit confused when I see so many on one person that I can’t tell what any are, and when someone gets one on their face, I have to wonder if they are going to regret that one. When I was younger I always said that I wouldn’t get one because I don’t know what it might look like when I’m old. Will it be stretched out, saggy, all faded and ugly? I guess now that I’m older I can get one and not worry about those things. Biggest problem there, not only do I not have any idea what I’d get or where I’d get it, the idea of being hurt intentionally for it, makes me run the other way, and I don’t really like the idea of having anything on my body permanently. But I do play with temporary tattoos. See…..

This is a Manifestation tattoo from Conscious Ink
“Let Go” is something I am trying to remember.


Remember all opinions expressed here are my own.

Today I’m feeling old.

Tomorrow maybe I’ll feel young again.

*all photos are the sole property of W. Holcombe.

Ten Things of Thankful – Mid January

On By WendyIn Chronic Illness, Thankful16 Comments

Today I’m taking part in the Ten Things of Thankful (TToT) challenge.
“Every week, bloggers from all over the world gather together here online to share with each other the things that they have been thankful for during the past week. Although the number ten is in the title, that is more of a suggestion than a hard and fast rule.” If you are interested in participating here’s the link to it. Ten Things of Thankful
“The blog hop opens every Friday morning at 1:00 a.m. Mountain time, and closes the following Tuesday at 11:55 p.m. Mountain time.?”

This week I’m thankful for:

  1. feeling better mentally and starting to get back to being me.
  2. my dog always being there for a cuddle, support, and listening to me when I need to talk. 🙂
  3. being able to drive this past Thursday, only 1 mile to the store, but it was glorious. (I haven’t been able to drive in the past few months)
  4. the weather was so nice when I drove I was able to take the top down on my car.
  5. my father-in-law’s wife appears to be okay after a fainting spell and a fall.
  6. I was able to go to my nephew’s birthday party and got to play with the sweetest child I think I’ve ever met. Such joy was emanating for her, I didn’t care I was hurting, she said she wanted to play with me instead of the other kids, that warmed my heart.
  7. I have the ultrasound on my kidney’s tomorrow to see if my ureter is still causing my urine to stay in my kidney’s too long.
  8. I have the love of my blogging friends and family. One in particular is going though a very challenging time, I’m grateful she can talk to me.
  9. I was able to just throw together a soup yesterday with mainly just pantry ingredients.
  10. last but certainly not least, I’m very grateful my friends who live where the blizzard has occurred are safe.
  11. extra…I’m grateful we had a few 70F degree days this week, it was a joy, and I’m grateful we have a fireplace for the cold night we’re getting tonight. (the warm weather will be back on the weekend…Yay!)

I think I could have gone on, there are so many things I’m thankful for this week. Some weeks I really have to struggle, but I’m so thankful for so many things. Like this challenge, I needed it to show me how thankful I am for so much!

What are you thankful for this week?

Psych 101.2

On By WendyIn Bipolar, Chronic Illness10 Comments

I saw my psychiatrist today, it was an interesting visit. I am feeling much better than I was. No more rage, but Stuart did admit I’ve been talking more, which was quite obvious in her office. I just talked so much and so fast it was crazy. I seemed to have been extremely happy and just couldn’t control it. I was thrilled that she was finally speaking up and I could hear her. She was even trying to slow down. She is normally very soft spoken and talks very fast with a Russian accent which makes it impossible for me to read her lips well. If I can’t hear her better, I’m lost. Stuart normally has to take the lead in my visits. Today I got the giggles, and when we got outside I busted out laughing. I thought it very funny that I was bouncing off the walls in her office. The whole thing seems very surreal.

It is now obvious that I am still having a manic episode, but it’s much better than it was. The main symptoms have been the extreme talkativeness, sleeping very little, and doing more than I’m really physically able, and today uncontrollable giggles. My Fitbit says that I’ve been getting at least twice as many steps per day than I normally do. I’m thrilled about that and hope I can keep it up; however, completely reorganizing my house and cleaning like crazy, that is taking a bit out of me, but I’d really like to finish. Oh, and I’m forgetting things, someone can tell me something or I can tell someone something then I can’t remember the conversation…that’s weird.

She asked me if this was normal for me when I have an episode. I told her I haven’t had a severe episode in almost 30 years, or more! This is new territory for me. I have had a couple of depressive episodes when my medication needed to be adjusted, but I could always tell myself that I knew it would end, and that got me through it until I could get my medication leveled out. True mania hasn’t hit me in a very long time. To be honest, when I had manic episodes before I was stable I would paint like crazy (often days at a time), lose time (meaning time would pass and I didn’t remember I didn’t realize it, or remember what I did during it), spend a lot of money (I once bought a Jeep on a manic swing), do very risky things (like drive to DC and meet with someone I’d only talked with on the phone) and be very promiscuous. Now, I’m not doing all of that, I did always talk a lot though. After I was diagnosed talking a lot was a sign to me that I was a bit manic, but nothing like I’ve been the past few months.

I’m grateful that we have found medication that seems to be working, it just needs to be adjusted. I hate that it’s taking more meds than I’d like to take, I’m hoping after I get stable for a while we can work on getting me off a couple. Today she increased the main med, took away something, and added another to help me sleep, hopefully. I’m having to take another drug to stop the akathesia that started with the new mediation, it’s an anti-psychotic and I’ve had trouble with those in the past, but this is a newer one that is less likely to cause this problem. Yeah, right. The drug that stops the akathesia is normally a blood pressure medication, weird huh?

So we’ve solved the riddle of why I’ve been talking so dang much. I can now stop telling myself to just “Shut the F up!”

so how’s your day been?

**photo of self manipulated with PhotoLab app. Sole ownership belongs to me.

Stop Talking!!

On By WendyIn Chronic Illness12 Comments

I can’t stop talking. I talk on the time!

I’m driving myself crazy and I’m sure I’m driving Stuart crazy.

During the day I talk to KIki (our dog) a lot. I think she likes, but how would I know? Lately I’ve been trying to figure out why I talk so much and how I can stop. I’m trying hard to notice and stay silent, but I tell Stuart everything that’s going on even if it’s not the slightest bit important. For example, just now I showed him a pdf that was a page that listed everything that is recyclable here, and told him I printed it and taped it by the bin. That was good, he’s been looking for that, I should have just stopped there. Then I started pointing out that the page had a blue background because our recycling bins are blue and it says to “Use the Blue”, I went on to say, however, the one I printed out is not blue because our printer only prints in black and white. All of this transpired while he was trying to read. How he gets any reading done I have no idea.

That is just a tiny example.

If I’m not talking I’m often slightly moving my lips because I’m actually talking in my head, but unlike most people I feel the need to say it out loud. A couple of months ago this actually got worse because of the mania, and I really noticed it then. I talked more and very, very fast. Now I’m back to my normal speech, but I’m really noticing how much I TALK! When did this start? I haven’t always been like this. What on earth prompted it?

Well I have a few theories.

When I first started losing my hearing I realized that I would often talk over people, I realized then it was for two reasons. One I couldn’t hear everything they said so I often didn’t realized they were still talking. (I wasn’t very good at reading lips, or even noticing that they were still moving….duh). I made a conscious effort to get better at that and I think I have. When I’m with others, like going to breakfast every Sunday with Stuart’s father, I don’t talk over anyone. I try very hard to understand what is being said and add to the conversation when appropriate. (hand patting back, I got that at least).

Another theory is, when I first got sick and for a long time after that, Stuart worked from home. Even at his last job he worked from home a lot. Here, he is gone all day, I’m alone and basically have no contact with people; especially when I’m having a flare and can’t drive or get out at all. I’m often texting, but that’s different. (I probably do that too much too) So when Stuart gets home he is bombarded with everything I’ve been thinking all day and everything that is happening since he’s been home. I have noticed when I’ve been in silence for hours and I suddenly see someone, like when Stuart gets home from work, I can’t understand much at all. His voice sounds all garbled and tinny. That’s just weird to me. I normally have the TV on all day trying to hear something so I’m not hit by that, but even with that noise going I still get bombarded by this garbled speech when I first see someone. Is that one reason I talk? So I won’t hear that?

I used to get so mad at him because he didn’t hear what I said. He would be watching a show or reading and just not hear, after all, he didn’t know if it was important or not. How could he, I talked all the dang time. Recently we made a pact that if we need the other to pay attention, we would let them know and ask them to stop what they are doing and pay attention., but other than that, I could just ramble, if he hears it, that’s okay, if not, no worries. I really want to stop talking so much.

In Buddhist teaching we find that talking all the time or for too long is a form of selfishness, while being easy to talk to shows respect, generosity, and courtesy toward others. Buddha saw being easy to talk to as an expression of love (Sn.143*). Listening is a virtue, not talking all the time.

So how to I stop this constant chatter? First I think I should meditate more, I’ve lost that practice along the way, not that I ever did it much. Practicing to sit still in silence has to be good for this person who can’t be silent. I know I won’t be able to silence the chattering monkey mind for a very long time, but if I can just keep my mouth shut for a while, that would be a big step forward. Perhaps I can remember the Buddha’s teaching each time I start to ramble. I shall also try hard to listen more, how can I be listening if I can’t stop talking. Of course there aren’t many people around for me to listen to, and often when I try I can’t understand what they say anyway…..part of the problem huh? I have noticed when I’ve been in silence for hours and I suddenly see someone, like when Stuart gets home from work, I can’t understand much at all. His voice sounds all garbled and tinny. That’s just weird to me. I normally have the TV on all day trying to hear something so I’m not hit by that, but even when that noise going I still get bombarded by this garbled speech when I first see someone. Is that one reason I talk? So I won’t hear that?

If all else fails, I can always tape my mouth shut…that will teach me!

**Everyone should read the comment by Kara, it is a wonderful contribution to this post. Don’t wait, go there now!

*Sutta Nipāta, ed. D. Andersen, H. Smith, PTS London 1913

Playing Keep Away with Medication

On By WendyIn Chronic Illness13 Comments

I’m so fed up.

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

image by pixabay.com

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

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

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

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

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

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

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

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

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

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

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

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