My Head Hurts

On May 30, 2014 By WendyIn Chronic Illness, Headaches12 Comments

I haven’t talked much about my headaches in a long time. I wrote a post about 10 weeks ago about my last Botox treatment for my migraines. I was thrilled at how well this treatment had been working. I SPOKE TOO SOON.

After the treatment I started having migraines that did not stop. I had a month-long migraine. After calling my doctor I was prescribed a short course of high dose steroids, this helped the migraines, but ended in a horrendous Vertigo attack, that caused me to be put on a month-long course of low dose steroids. Through out the month I was still having headaches. The break in headaches during the short course of high dose steroids didn’t last long.

I have been having not only migraines, but a lot of different kinds of head pain. The one headache my doctor agrees I’m not having is Rebound Headaches. also know as Medication Overuse Headaches. There are certain medications that you take on a regular basis that cause you to have rebound headaches, I do not take most of these medications, and the ones I do take I do not take on a regular basis. I am extremely cautious about this. I am very afraid of getting rebound headaches.

For weeks, months now, I have been having severe pain. It wakes me up at night, screaming, often yelling NO, NO, NO….with tears running down my face. I’ve been studying Mindfulness Based Stress Reduction to help with chronic pain and this has helped, but I can’t control the pain when I’m asleep. I dream about being in pain. I’m nauseous. I wake up so exhausted and I have no idea how to stop this pain. There have been two different types of headaches I’ve been getting that are different from the migraines. One is a sharp pain that feels like a poker stabbing me in the eye, my eye waters and I can’t open it all the way. It’s only on one side. It is the most intense pain I’ve ever felt. I have a much greater appreciation for the song Maxwell’s Silver Hammer by the Beetles, however I wish he would make sure I was dead at the time. (this is only the pain talking) I can only rock back and forth and pull my hair, I scream….it came at the same time each day for 5 days, it would last for about an hour or so, stop then return in about an hour…this would have for 4-5 times each day. Then they stopped, for 5 days, and started again, for 3 more days. To date, they haven’t come back so far…..Yesterday I was seen at Duke’s Pain Clinic, I saw my Neurologist’s (who is a Headache and Facial Pain Specialist) Nurse Practitioner, since this was an emergency appointment. I now have a new diagnosis. CLUSTER HEADACHES.

Cluster Headaches (have been called suicide headaches) occur in cyclical patterns or clusters, which gives the condition its name. Cluster headache is one of the most painful types of headache. Here’s a link to find out more about them at the Mayo Clinic site. Cluster Headaches via Mayo Clinic There are many other good resources on the internet too. Cluster headaches can go away for weeks, months, even years. They often return with seasons. I hope mine never return. If they do, I know they will end, and that will get me through it.

I’m also experiencing a lot of pain in my neck, this pain also comes on while I’m sleeping. It rarely happens when I’m awake. It does cause some of my muscles to tighten, but the main pain does not feel muscular. I must have a CT scan to try to find out more information. This pain started after the Walmart expedition. When I was in the car I was not in a very good position, my head and neck were at an odd angle. I don’t know, but I think this may have attributed to this pain.

So every night at 4 am I wake up in pain. EVERY NIGHT. I try to help it, change position, meditate, massage, anything…. and it will feel better, I will go back to sleep, and about 15 – 20 minutes later I’m awake again…..OH it hurts! and we start again….it goes like this until I give up. I try so hard not to wake Stuart. No need for both of us to lose sleep. I’m exhausted. Sleep deprived. Some days I can nap a little. Sometimes during these naps I will wake up screaming. It is terrifying to wake up screaming and crying. I know my husband is so frightened for me. I hope the CT scan will give us some answers. I also hope it is something that can be easily fixed.

Why suddenly am I having headaches that wake me up with so much pain? Why am I having headaches that are so different from headaches I’ve had before? We don’t know. There is no known reason why Cluster Headaches start, some studies suggest certain things, but there are no conclusive answers. My other headaches? We are working on finding that out. My CT scan is schedule for June 16th, and my return visit to the Pain Clinic is on the 19th. Hopefully, I’ll have some news then. How I’m going to sleep until then, that is a mystery……but one I’m sure I will unravel.

Bang! Bang! Maxwell’s silver hammer
Came down upon her head
Bang! Bang! Maxwell’s silver hammer
Made sure that she was dead

GRATITUDES in abundance this week!

On May 25, 2014 By WendyIn Chronic Illness, Disability, Gratitude16 Comments

I’m fickle! The name Attitude of Gratitude isn’t going to stick. I didn’t like the attitude part. Just recognizing that we have things to be grateful for is the most we can strive for sometimes, so my weekly posts will simply be called GRATITUDES! (I realize this isn’t really a proper word, but I like it! It has a bit of an, shall I say, Attitude! ha! Feeling a big cheeky today aren’t I?) Now, on with the GRATITUDES!

I have so much to be grateful for this week!

Not to say that there haven’t been challenges, but this post is going to focus on the many things that I am so very GRATEFUL for!

Hubby is working!!! This week Stuart started a part-time contract position. It is a position that he is very excited about, doing something that he wants to do. The company is new, so it’s not full-time, yet, and we don’t know when it will be. There is more about this that I will tell later…..right now, I just want to say…..I am so grateful that my husband has a job, and it’s a job he is excited about.

My father’s tumor is GONE! My father was diagnosed with liver cancer this winter. He has been undergoing chemoembolization treatments. He went in for tests on Thursday, before setting up his final treatment, and there was no tumor to be found! He will need no further treatments. He does have to go back in a few months for an MRI just to be sure, but all looks great. I’m amazed at this treatment. Each treatment he has gone in, had the chemo delivered straight to the tumor, and has gone home the next day. He feels icky for a couple of days and then he’s fine. He had 3 treatments. He says he feels great, just old. : ) Also said, he wants to lose 10 pounds, and he’s thrilled he still has all his hair! How many 81-year-old men can say that? I’m so grateful my father’s cancer is gone.

Baby Bunnies Safe. Stuart was mowing the lawn this week and uncovered a nest of Baby Bunnies! He was so upset. He just fretted over these poor little things. He actually mowed right over them! They didn’t really move, acted like they didn’t really notice. He covered them with an upside down flower-pot. Then he asked me about it. He thinks since I grew up in the country I know everything about all woodland animals and plants. I know a little…like the fact that baby bunnies are called kittens, and they have their babies in a nest, but that’s about it. So off to the internet! He was afraid mama bunny was going to abandon babies. He found out that the mama only visits during the night a couple of times to feed the babies. It said to cover them with loose grass or straw, we had dried corn husk so he put that over them. It said if there was any sign that there was any digging around then she had been there and all was good. (He saw digging, and the second night, he even saw mama bunny, he was so relieved!) Since the ears are up, and eyes are open, these bunnies are about the go on their way all by themselves. I told Stuart he was a good Bunny Daddy. He said NO, he wasn’t their daddy. I said, Step Daddy….he looked, shook his head and said….Foster Dad. I liked that. Bunnies are safe, and the nest is just right outside our back door. Might be a good thing we don’t have a garden this year. (our back yard does back up to woods so these bunnies will have a perfect place to grow up.) I’m so grateful that the bunnies are safe, and that my husband has such a kind and compassionate heart.

I had a BATH complete with washing hair and shaving legs – this may sound like a little thing to many, but this is a VERY BIG DEAL FOR ME! I have a very hard time taking baths and showers. Showers are worse than baths for me. I have to stand in a shower, the only thing helping me stay stable is my feet and my hands on the walls. If my hands are on the walls how am I supposed to wash myself? So stability is not very good. Falling is very easy. Shower has equaled many disasters. (I have tried a shower chair, it was not a success.) I can only take a shower if Stuart is with me, unfortunately this is not nearly as much fun as it used to be! (darn) A bath is easier, but still a challenge. This week I did it! I will tell you all a little secret. This is the first time I’ve washed my hair in 6 weeks. Yep. That’s right. I washed my hair the week right before my Walmart expedition. Then I had weeks of having vertigo on and off and constant disequilibrium, I couldn’t wash my hair during that time. My personal hygiene consisted of washing up at the sink or sponge baths. Therefore, I am very grateful that I was able to take a bath, wash my hair, and shave my legs!!!

More things I’m grateful for this week!

dandelions — Flowers my hubby brought me when I couldn’t go outside.

CIMG3324 — Blue skies I could see from my window. Grateful I could still enjoy the blue sky even if I was too dizzy to go down the stairs.

CIMG3341 — Grateful my husband can cook, and made such a wonderful meal! Yummy, Orange glazed Cornish hen with quinoa and roasted asparagus. (no we don’t eat like this every night.)

CIMG3331 — Grateful Max still likes to play, and spends a lot of time with me when I don’t feel like doing much. Loving this picture, showing so many of his extra toes!

That’s it for this week.

Some major things to be grateful for, and a few things I’m grateful for that some people probably wouldn’t notice.

What are your GRATITUDES this week?

Me and my blog…..it just is.

On May 22, 2014 By WendyIn Chronic Illness, Health9 Comments

After more thought, and feeling much love, I realized hearing the “criticisms” about my blog, and/or me, hit home because I was feeling critical about myself. I don’t think of myself as a negative person, but I was feeling it, and didn’t even realize it. My life has changed drastically over the last 4 or 5 years, and the one thing I felt I held on to was my ability to see the best of the situation. I never asked “Why me?” I said, “Why not me?” This is very important to me. This is a part of my very essence. I was afraid I was losing me.

Let’s face it, the past couple of years have been very challenging for this household. Yes, we’ve met these challenges head on, but they just kept coming…..and coming…and coming……..often the solutions have not been as easily forthcoming.

It has been wearing me down. Much more than I realized. Not one to dwell on things, I normally allow myself to feel the emotions that go along with a challenge then I make a plan, and deal with it. “How do I handle this?” “What can I do?” “What’s the best way….????” Unfortunately, many of the challenges I’ve had to face recently have been completely out of my control, or the resolution is not easily obtained.

My husband lost his job…..what can I do? I asked myself that often. I felt guilty that I couldn’t work. I tried to get disability and was denied. (yes I’m appealing, but it’s taking a long time.) Totally, out of my control. No easy fix.
Sandy died. My best friend. My constant companion. I felt lost. In many ways I still do. I felt guilty. I felt I let her down. I know that’s not the case. The grief has taken a lot out of me. Out of my control. No easy fix.
I’ve had added health issues. Out of my control. No easy fix.
My health issues have gotten worse. Out of my control. No easy fix.
My father was diagnosed with cancer. Out of my control.
ect…ect…ect…….

Yep, I was having a hard time being me. I’d look in the mirror and think, where are you? I know you are in there somewhere….come out! I was ready to hide. After everything, I felt broken. And I could not admit that, not even to myself.

I talked on here about my fears, my pain, everything. I’ve been honest. However, inside I could not wrap my head around the fact that I was really and truly scared that things would never get better. No matter how many times I might have said it, and wanted to believe things would get better, the fact that they may not was driving me crazy. The thought that things would not get any better…..that was just not acceptable.

Then I realized, I’m looking at this all wrong! I’m thinking too much in the future. I don’t know what the future may hold. I have been freaking out over what has been happening, and I have been building up these stories in my mind about how my future might unfold. These stories have not been great. This is not a healthy way of thinking! I cannot live in the future, no more than I can live in the past. The only place I can live is in the present. Yes, that sounds very Zen. Yes, I’ve been reading a lot about this, but it makes sense. If I’m constantly thinking about what tomorrow might bring, good or bad, I’m going to miss out on today. That doesn’t mean I can’t make plans, but it does mean I’m not a slave to them and I’m not going to get all bent out of shape if something happens to change them. It also means I’m not constantly looking back thinking, “I just want my old life back.” that’s not going to happen, I’ve known that for a long time. Focusing on the present gives me the opportunity to enjoy my life as it is, without disappointment about dreams that didn’t happen, or romanticizing about a past that I can’t have anymore.

In short, my outlook is changing. Luckily, so are things around me. Would my outlook be changing if things were continuing to be spiraling downward? Yes, I think it would. I think it has been, I just haven’t been writing about it here as much as I probably should have been. It’s a work in progress, or to put it more correctly, I’m a work in progress. I always will be. So will this blog.

I want to share with my readers, my friends, this side of me. It is time to share more of the side that is brave, positive, compassionate, and thankful!

Yes, I will continue to come here and speak open and honestly about everything – all of it! I can’t help it, it’s who I am. If you would have suggested that I close the blog, I would have turned it private and continued to write, just for me. This stuff has to come out somewhere! However, I want you to see how I am handling the rough patches, how grateful I am for all the little things in my life, and how much I really do enjoy my life….”ants” and all. But there will be times when I don’t handle things well, and you will continue to hear about that too. It’s all part of living with chronic illnesses!

I’ve decided to challenge myself a bit. Each week I plan to write a post called Attitude of Gratitude. These posts will include things I’m grateful for that week. These posts may include pictures, drawings, stories, words…..or some times it may just be one word….who knows. I want to make sure I never let a week go by that I don’t think about things for which I’m grateful. I try to do this every day, but we all know some days we just get a bit overwhelmed.

You are welcome to join me in this challenge. We can make it an official challenge if people are interested. I’m going to do it, for me, and hopefully to inspire others with chronic illnesses to look around and notice the little things that they can still be grateful for.

Thank you all for taking my Poll! It was an overwhelming landslide that I should continue to write as I do. I promise I will continue to write as open and honest as always. I will continue to show the bad and the ugly sides of my illnesses, but I want to even it out and show the more positive sides too. Yes, there really are some!

I’m so very grateful to have such wonderful friends! (many who I have never met in person)

The comments and emails I received after my last post amazed me! Thank you all so very much!

Sending the wrong message??

On May 19, 2014 By WendyIn Chronic Illness8 Comments

I started this blog because I needed it.

I needed to put a voice to my illnesses. To help me get through.

I continued this blog because I felt it helped others. It helped them to know they were not alone. It helped to know that just because you have a chronic illness it doesn’t mean your life is over. I thought I was sending a message that said, yes, this is all a part of me and I’m alright with that. I have multiple chronic illnesses, some are invisible, some are not so invisible. I work very hard not to dwell how my life has had to change because of my illnesses, I strive to focus on how happy my life is now.

I wanted to help others realize that their lives can be pretty darn great too.

Recently, it has been pointed out to me that I have failed.

Not only have I not succeeded in showing people I am satisfied with my life, I have failed in helping others realize they can be happy with their life after chronic illness hits.

This blog has never been all about the sunshine and roses part of the chronic illness world. I do talk about every part of my life. The good, the bad, and the very ugly parts. I don’t hide. I don’t want people who are ill to think they have to hide. I’m beginning to think I may be wrong about that. I hope not.

The past year….plus….has been extremely difficult for me. I have had a lot of physical and mental challenges on both the home front and with my health issues. Of course, these challenges have come across in my blog. Every time I’ve written about a challenge, anything from my husband losing his job, to my increased vertigo attacks, I have tried to write each entry not just with pure emotion but with simple facts. This is what is happening, this is how we are dealing with it…ect. And I always try to end on a positive note. After all, I really do not feel negative about everything that has happened. Things happen to people, why should I be so different? This is my life, illnesses and all. Life is a gift, I’ll take mine the way it was given and I’ll make the most of it…..I’m learning how as I go.

Someone recently told me that my blog is a place I go to vent. I agree, I do vent on here, sometimes. I never thought that was all that I did. I just went through ALL of my post from January 2013 until now, and I have to admit, if you just look at the surface, most of them do seem like they are simply me venting about what is going on. Ironically, the past few months many of my posts have not been that kind of post. I’ve had plenty to vent about, and have posted about some things that I feel were very important…things that should be “vented” about. However, I’ve also written some pretty light-hearted posts.

I was also told recently that I can be a bit negative. Well, not in those exact words, it was more like….people don’t want to hear negative things all the time… I agree. I didn’t think I was a negative person. At least not all the time. Recently, I have had some things to post about that needed to be talked about in a negative manner, for example, when a doctor treats you improperly. Over all, I believe I have a more positive outlook about my life than negative. It saddens me if that does not come across.

Today, I wrote someone in my family an email. I hadn’t written in a while and apologized upfront, explaining that I had been having a rough month physically, but wasn’t going to talk about that and it was no excuse for not writing….then proceeded to write the email informing her of some positive things that were going on. I soon got a reply telling me how UPBEAT I sounded, and how she hoped I felt as good as I sounded…..ect. I was confused. I did mention in the first sentence that my health had been bad this past month, but all she heard was the UPBEAT tone. hmmmm. Do I normally sound like a sourpuss?

All of this, combined with a lot of soul-searching lately has made me wonder, am I doing any good here?

Yes, I started this blog just to help me….it was a private blog in the beginning, just a journal.

However, as I learned to accept living with my illnesses I felt my blog blossom into something much more. I felt it was touching others. I wanted to help other people know they aren’t alone, and you can have a great life. (Even if you have a lot of bad days.)

Let’s face it, it is easier to write when I’m having a hard time. When I’m feeling great, I’m too busy trying to live every day the best I can! On the bad days, I know my friends are here.

So I have a poll for you

I’m Perfect.

On May 15, 2014 By WendyIn Chronic Illness4 Comments

“Life is simple.

Everything happens for you, not to you.

Everything happens at exactly the right moment, neither too soon nor too late.

You don’t have to like it… it’s just easier if you do.”

― Byron Katie

“On a deeper level you are already complete.

When you realize that, there is joyous energy behind what you do.”

— Eckhart Tolle

“On a deeper level you are already complete. When you realize that, there is a joyous energy behind what you do.” ~Eckhart Tolle – See more at: http://tinybuddha.com/blog/10-ways-i-know-theres-nothing-wrong-with-you-or-me/#sthash.nD2LjiuD.dpuf

Living in This Moment

On May 6, 2014 By WendyIn Chronic Illness, Meniere's Disease5 Comments

A train of thought post. One thought moving to the next…..

A chronic illnesses can shake your foundation, it can make you question everything…..

“Can I really live this life that has been handed to me?”
You question…..”Why, is this happening to me?”
You think….”I just want my life back….”
You create a story….”My life would be better if only….”

In the very harshest moments, the fear takes over.

What if this doesn’t get “better”? What if it doesn’t end? What if I’m always like this?

This has been going around my head for the past two weeks. The symptoms are not getting better. Are the side-effects from the medication making it even worse? Dealing with vertigo, and dealing with the side-effects from steroids are, mind b-o-g-g-l-i-n-g. My brain will not keep still, no matter how hard I try. BREATHE I keep telling myself. JUST BREATHE I’m jumpy, nervous, anxious, scared….and I’m so woozy, dizzy, sea-sick…..

BREATHE

OUT

BREATHE

ahhhh, just a little.

NO, NO…don’t move your head. You would think after two weeks I would know I can’t move my head. I guess that’s an over-statement. I can move my head, just very, very slowly. Still, I feel as if the room moves with me. The unsteadiness is disconcerting, and is causing the bile to rise in my throat. BREATHE. It is just a MOMENT.

Stay in this moment.

Do not think about the next moment.

Stay here…right here. In the NOW.

I was thinking. I’ve been thinking a lot recently, probably way too much. I have been through a lot of medical tests, procedures…..ect….in my life. I’ve broken bones, had major surgeries, I have dealt with pain, a lot of pain. When I have been undergoing a test or treatment and it is very painful my medical team will often ask if it is “tolerable”? I have only said “no”, once. And I soon went back to that test and finished it. The thought that it will end, makes it tolerable to me. It will only last a moment. I’m in that moment. I know this will end. I can handle anything for a moment.

Why is it different now? The pain is not “worse”. The vertigo is not “worse”.

It is the MOMENT.

I cannot stay in the moment. My mind has jumped to the story….”What if this doesn’t end?” The moment is not just a moment. But wait! Every moment ENDS. Each moment is different!

Look….the moment you just read that is different from this one. It just is. You couldn’t predict it. It is different from this moment and will be different from the next.

If there is one thing I’ve learned over the past few years, nothing is permanent.

Everything changes.

Each moment is a moment.

It is not the past, or the next. it is not better or worse…it just IS.

it is the moment. and I can handle any moment. After all, it’s just a moment.

It is the moment I have.

I will live in this MOMENT.

An Expedition – Part 2 “A Look Inside. What did I learn?”

On May 1, 2014May 1, 2014 By WendyIn Chronic Illness, Meniere's Disease8 Comments

After listening to myself, I decided I should stop trying to figure things out when a vertigo attack starts. It doesn’t help.

I can’t stop a vertigo attack.

If I try to figure things out during an attack I’m creating more angst for myself. This is already an extremely stressful situation, adding to it does not help. The best thing I can do for me during an attack is to try to stay as calm as possible, and ride it out. Stay safe and take care of me.

It is now a week later, I’ve had time to look back, and think about things:

I noticed I was feeling antsy, anxious, even a bit manic.
I literally had the feeling of shaking inside. A physical reaction.
When I started out to get in the car I lost my footing and felt unsteady.
At the store I noticed the noise was too loud.
We planned to go for a short trip, but once we got there I decided to stay longer.
I had to stop more than once because I needed to get focused. (I needed to focus my eyes on something still.)
I was irritable.
People were annoying me.
When I couldn’t hear Stuart I got annoyed.
The irritability got worse as my focus got worse.
When we were in the can goods aisle I noticed that I felt things may be moving. *** It wasn’t until this step that I really noticed that I was having to refocus on things and that I was feeling annoyed and irritated.

That’s a lot of things I could have picked up on. Or is it?

For the past, almost year now, I’ve had a very hard time leaving the house for anything other than doctor’s appointments. Yes, I’m a bit agoraphobic. I think it’s understandable. There’s a real possibility that when I go out I will have a vertigo attack, an asthma attack, lose my balance and fall, ect…. I feel safe at home. This doesn’t mean I don’t go out. It means I’m afraid when I do. Sometimes, the fear wins, and I stay home. Yes, that’s alright with me. I’m still able to do go out and do something enjoyable now and then. I work on it, but I still don’t want to take a lot of unnecessary risks.

Because of this fear, this sometimes paralyzing fear, I did not sit back and really analyze the anxiety I was feeling before we left, or the anxiety I was feeling in the store. I was proud of myself for going! I was proud that I got out of the car and went in the store! I was proud of myself for feeling like I didn’t have to run from the store screaming! So, not picking up on the anxiety being anything more than “normal”….understandable.

So I ask again. What did I learn?

First, I did learn I need to think before I leave. Listen to my body!

Is this feeling because of my fear of leaving or something else?

This time, it was mostly due to the fact that I had been put on a course of steroids and I was having a reaction I had not had before. Yep. I’ve heard many people tell me you can have these symptoms while on steroids, I simply haven’t had them before. However, I was on a short pack of high dose steroids to break a month-long migraine. It worked on the migraine. That’s also why I was feeling a bit “manic”, and physically jumpy inside. The physical jumpy feeling should have been a big clue.

Second, I learned that I do not do Big Box stores well.

Even if I had not been taking steroids, I was not focusing well in the store. The tall aisles, with the repeating merchandise…..over and over…. The way the noise travels in the store….all of this, simply, is not good for me. I learned this is a trigger for me.

Would it have helped to understand this during the attack? NO!

Will this knowledge prevent future attacks? Maybe

A person who has Meniere’s Disease is at the mercy of a vertigo attack. A vertigo attack cannot be predicted. It simply can’t. Sometimes we have little clues that it may be starting, sometimes we don’t, but never can we predict it. Nor can we stop it. It is not our fault if it happens. No matter what we do. We can avoid our triggers to try to decrease the attacks. We can take care of ourselves to try to make it easier to handle. But we must remember we cannot blame ourselves.

I can never be in control.

Picnic with Ants