Acceptance Part 2

What a month! As April was coming to an end, I was informed that iMatch had an opening sooner than I was scheduled, so I went into the iMatch program at Cleveland Clinic on May 1st. I entered with apprehension. I didn’t know what to expect but I did know that I hadn’t made it through a day without resting in a very long time. This program’s schedule is booked from 8:00am to 5:00pm. I ready for acceptance because I did not want to accept that I would be living in this much pain for the rest of my life.

Day one was a whirlwind of information and schedules and meeting the staff. I hardly remember it. The first week was full of infusions (IVs) for most of the day. I had to bring my lunch with me to the infusion room and eat during this time or I would be without lunch (as I learned the first day of infusions). That week was awful. It was full of not feeling well and barely making it through the day. After infusions, at the end of each day we had cardio or strength and stretching. I don’t know how I made it through. I slept most of that first Saturday. Then Sunday I was ready to explore my new (temporary) world. I walked and walked. I ended up finding a hair salon that was open and decided to get my hair cut. So I walked some more and got lost. My phone had died, so no GPS. I went old school and asked people on the street to help me with directions. By the time I got back to my hotel I could barely walk, my feet hurt so bad! But my hair looked fabulous!

The second week was full of learning about migraines (which I do not have) and chronic pain. I learned that my head pain is not classified as a migraine, it is more of a disease caused by a virus that damaged neurons in my brain. So, I often heard “and that doesn’t apply to you” at various times during the sessions. Don’t get me wrong, there was a great deal that did apply to me due to the chronic pain. The second week flew by with a great deal of relaxation techniques, nutritional info, and wonderful support from great new friends! Don’t forget the cardio, strength and stretching. During week two we were kicking it out. Haha

Mother’s Day was rough without my family though they each called, face-timed, and tangoed me. I was able to go on a hike with new friends and we had a wonderful lunch together. Not a bad day after all.

The third week also flew by with more relaxation classes and dealing with pain; and of course the gym and PT. As “third weekers,” we helped the first and second weekers with the routine. We had some classes with the second weekers while the poor first weekers were getting infusion. We also had classes for discharge and getting back to life at home. I have to admit it was a scary thought, going home and applying my new-found knowledge without a daily agenda. Although I felt stronger, I wasn’t confidant.

Now I’m home and so thankful to be so! It is different. There will still be good days and bad days. The difference is that I will be more active (but not overdo it) on the good days and try not to let the bad days get me down. During the program, I came to the conclusion that I cannot control my head pain, but I don’t have to let it control me either. I realized that my life is not over, it just needs to be modified. As a former teacher, I know modification.

So, yes I have accepted that I have chronic head pain that will most likely never go away. It is with me every minute of every day without fail. It likes to keep me aware of it. However, I will live. I am lucky. I am not alone. One day at a time.

Thank you to all of my friends and family (BAMM) for your support during these tough times! I appreciate you all!!

Talk to you soon…

Acceptance?

If you have been following my blog, you know that I was scheduled for an appointment at Cleveland Clinic. Bob and I took that long drive and it was not what I had…anticipated? Hoped? Wished for? Basically I was bluntly and honestly told that I need to learn to live with my pain; and that my new diagnosis, New Daily Persistent Headache, is very resistant to treatment.

Moreover, I was told that it is time to accept my head pain and learn to establish some quality to my life. Over the past 16 months I have been fighting and researching for solutions and help to end this pain. I am not sure I know how to accept that it may never go away. (As a matter of fact, I am told that my chances for the pain to go away at this point are slim to none.) Cleveland Clinic did have a suggestion. They offer a three-week treatment that will help me to learn acceptance, mindfulness, and physical therapy to increase the quality of my life and develop strategies for living with chronic head pain. The program (iMatch) includes infusions (IVs) for those who need to get off narcotics (I am not one). There is also group and individual therapy with various topics, and two hours of physical therapy (group and individual) every day.

Three weeks is a very long time to be so far from home. The program is outpatient, so I am responsible for my own lodging and food ($$). After a great deal of discussion and consideration, Bob and I agreed that this treatment program may just be what I need. My current neurologist, psychologist, and therapist all agree and encourage us to try the program. My insurance covers most of the treatment cost, so I am booked to go in May.

I am excited and nervous. Excited because I have developed some hope for more quality of life. Nervous because, did you read the two hours of physical therapy every day? I go for walks with Bob and our dog but not for two hours! The pain medications have helped me to gain a great deal of weight, and movement is not exactly easy because the weight and the pain. I would like to find something physical that I can do without increasing my pain level though, so I am hoping they will teach some activities that will work for me and maybe even help me lose some pounds.

So, will I learn acceptance? I hope so because I right now I want to believe there is a cure, and do not know how I can survive the rest of my life with this much pain.

“You Don’t Look Sick”

Having chronic severe head pain I don’t go out very often, but when I do it can be very awkward. For instance, grocery shopping usually wears me to the bone. I often hold on to the shopping cart and kind of let it drag me around as Bob pushes. I feel like the toddlers you see doing this. At the end when we are in line to check out, I am leaning on the cart or I go to sit down on the bench in the front of the store. I’m in a great deal of pain and I’m exhausted. People give me very strange looks, they don’t see anything wrong with me. There are times when I have to wear my earplugs (they are a bright yellow) and I get strange looks, like what’s my problem? There are also wonderful friends that I occasionally run into that ask the expected question, “How are you?” I’m never sure how to answer this one. When I’ve said fine or good, people thought that my pain went away and I was all better. When I’ve said getting by or something similar, people seem to feel awkward and don’t know what to say.

While I was in the hospital for treatment, I attended group meetings on how to deal (or live) with head pain. In one session we were given an article to read and discuss: The Spoon Theory by Christine Micerandino. This article was not written by someone with head pain but someone who had an illness that could not be seen physically. Micerandino found a wonderful way to explain what it is like to live with her illness. Since she has many of the same situations and difficulties as I do, I have modified the article to fit my life with head pain. It’s worth the read:

The Spoon Theory  By: Christine Micerandino

Modified by Lori Milne

You Don’t Look Sick

My best friend and I were in the diner talking as usual. It was very late and we were eating french fries. Like most women who get together, we were talking about what was happening in our lives. We never got serious about anything in particular and spent most of our time laughing. Then she asked me out of the blue what it felt like to have head pain and to be sick like I was. I was surprised because she asked the random question and I thought she already knew all there was to know about what I was going through.

I started to ramble on about pills, fatigue, and aches and pains; but she kept pursuing and didn’t seem satisfied with my answers. She then looked at me with a face that every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like to be me.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I needed to find the right words. How do I explain every detail of every day of how I am affected and the emotions that I go through with clarity? At that moment the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables too. I looked at her in the eyes and said, “Here you go, you have head pain.” She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands as I grouped them together and shoved them into her hands.

I explained that the difference between being sick and in pain and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t need to. The healthy have the luxury of life without these decisions, a gift most people take for granted. So, I used spoons to convey this point. I wanted something she could actually hold for me to then take away, since most people who get sick feel a loss of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else be in control, like living with chronic pain.

I asked her to count her spoons. She asked why, so I explained that when you are healthy you expect to have a never ending supply of spoons. But when you have to plan your day, you need to know exactly how many spoons you are starting with. It doesn’t guarantee that you might now lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said that she wanted more but I told her there were no more for her. I’ve wanted more spoons most days also, but they are not there for me either. Then I told her to always be conscious of how many she had and not to drop them because she can not get them back.

I asked her to list off the tasks of her day including the most simple. As she rattled off daily activities, I explained how each one would cost her one or more spoons. I told her to start at the beginning, so she jumped right into getting ready for work as her first task of the morning. I had to cut her off and and explain that she hasn’t gotten out of bed yet. “You have to crawl out of bed. Then you have to take your medicine and get something to eat or else you will be sick.” I take away a spoon. She says then she takes a shower. Showering causes a great deal of pain because of the water hitting her head and then she has to shampoo and condition her hair. It is also exhausting but she still needs to dry off, dry her hair, do her daily moisturizer, and get dressed. She will need to factor in 1-2 hours to do all of this. I take two spoons for showering and two spoons for after shower requirements.

I think she was starting to understand; she lost five spoons and the day hasn’t even begun. I explained that she needed to choose the rest of her day wisely since you only have seven spoons left. We went through the rest of the day . She learned that feeding the cat and cleaning out the litter box cost her a spoon. Emptying the dishwasher, especially if looking up, is another spoon. Typing on the computer, reading for just 5-10 minutes, running to pick up a prescription, playing fetch with Kira, and listening to an audio book for a little while are all one spoon each. That’s 12 spoons. There aren’t any spoons left and she hasn’t even made dinner, another spoon. Going out to dinner is two spoons. She was forced to make choices and think about things differently. People who are sick need to plan their day ahead of time. Others just don’t understand that last minute plans are very difficult to accommodate.

My friend had tears in her eyes and asked quietly, “How do you do it? Do you really do this every day?” I explained that some days were worse than others, some days I have more spoons then most, and other days I start with less. But I can never make it go away and I can’t forget about it. It’s always there. It’s hard, the hardest thing I ever had to learn is to slow down, that I can’t do everything I used to. I hate feeling left out, having to choose to stay home or to not get things done that I want to. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. I miss the freedom of never having to count spoons.

Ever since this night, I had used the spoon theory to explain my life to people. It has become a code word for what I can and cannot do. Once people understand the spoon theory, they seem to understand me better, but I also think they live their lives differently too. I think it isn’t just good for understanding chronic pain, but anyone dealing with any disability or illness. I give a piece of myself, in every sense of the word, with everything I do. It’s extra special when I get to spend time with people. I always try to save some spoons for that; but some days use up spoons from the next day and it isn’t always possible. Oops, there goes another spoon…

 

Optimism Tested

It’s been a while since I have blogged. Holidays have gone by and I have been struggling with increased pain; however, the holidays were great. Seeing my family and being together is the best. We’ve had a few chances to get together since the holidays also. I love that! I am adjusting to being home alone most days but I still get lonely sometimes.

The sun is out today for the first time in what seems like forever! I do enjoy that but I have still been struggling with keeping up my usual good spirits. It’s been more than a year since the beginning of all of this head pain. I have remained hopeful that a source of the pain would be discovered and a solution implemented. I am losing this hope. So many times I have put all of my hope into a procedure and/or appointment just to be let down. After a year, it is difficult to find hope again. I am trying.

I just had another appointment and we discussed a referral to Cleveland Clinic. I have an appointment set up there for March. Although, we have to drive all the way to Cleveland for a one hour appointment. Traveling is very difficult for me and I am afraid to build up my hope. I do not want to ride all the way there for one hour and then be told I have to come back in a week or so for testing, etc. With the travel and expenses, I wonder if this will be worth it. On the other hand, I want to do everything I can to improve the quality of my life. Has anyone gone to Cleveland Clinic for a consult? Do you know how this works?

Looking for advice and hope…

Disability: a Right or a Privilege?

Having applied for disability through both a workplace insurance and social security has given me a new insight and concern. I began with applying for long-term disability through my workplace at the recommendation of our COO. After filling out the application and gathering all of the required documents, it took several months to find out I was denied. I’ve been told this is typical and I need to obtain a lawyer to appeal because I only have one chance at an appeal.

With the loss of my job we have had our income cut almost in half, thus there have been some major spending changes but thankfully we have been able to create a budget to live within. For example I’ve gone without a car for a while and now have a small car that I hope will continue running for a couple of years, we canceled our cable, and do not go out much at all to name just a few changes that we’ve made.

Going through the process of creating and living within our new budget makes me wonder what people do when they don’t have a spouse or partner with a good job? What if they cannot live within their new budget? What do people do? I asked my therapist this question and she told me that many of these people end up homeless and in shelters. Does this make sense to anyone? Why does the disability process take so long and then typically end up in a denial anyway? All along the way I’ve been told that I wouldn’t have a problem getting disability, but here I am waiting for my attorney to put together an appeal. There has to be something that we can do to improve this process. People should not end up homeless because it takes so long to get approved for disability.

I am still waiting to hear about my social security disability. I was examined by a social security appointed neurologist two weeks ago, so I am not expecting to hear anything too soon. People tell me that it is typical to be denied “the first time” from social security also, and that I will need to appeal this also. I’m telling you that attorneys who specialize in disability have to be in high demand. It is pretty much guaranteed that one will need to get an attorney to appeal the denial in order to receive disability. The cost is very high and attorneys only take cases that they believe will be successful. All I can say it is unbelievable that people need to go through all of this in order to get what they have already paid for! Again I think about those who cannot afford to wait this long and then they have to obtain and pay a lawyer?

Does anyone know how to help? Have you had any experience with this process?  I am just…beyond words.

‘Tis the Season

I hope everyone had a terrific Thanksgiving! I most certainly did, enjoying the company of my family. They were a great help and I hardly had to do anything, which was good because I was not feeling at my best. If I had felt better we could have gotten some family games in but that was not in the cards this time. We still had some wonderful family time. The next day Max, Bob, and I put up the Christmas decorations. It is nice to have the house decorated, it certainly helps lift the spirits.

Although I spent the next few days crashed on the sofa, I am up, showered, and ready to head off to anther doctor appointment. This is just a medical examination for disability, so no new medications this time. I am all set for my botox trip next week. AnneMarie is going to take me this time, and she will be holding my hand through it. I don’t look forward to the multiple shots but I am hopeful it will help bring the pain down to a manageable level. I don’t think AnneMarie knows what she is in for as my support person. Haha. I’m such a baby when it comes to needles! Speaking of which, no I haven’t used one of my injection abortives yet.

Changing the subject…

Have you gotten your Christmas shopping started? I have been burning up the internet and my husband’s credit card and now  I am nearly done. I remember the days when I used to have all the shopping done and wrapped by Thanksgiving! Not this year. Haha. That’s okay, I still have time. I am just thankful to have the decorations up. Now I need to start thinking about Christmas cards. There is so much that my mind wants to do and so little that my body and head allow for.

Until next time, enjoy your last days of November (can you believe the year is almost over?).

Holy Shot!

November 22, 2016

As mentioned in my last post, I was in search of a new medication combination because my head pain has been increasing instead of decreasing. Thus, I went to my appointment in hopes of getting some new medication. In a way I got it but not in my regular daily combination, I have a new abortive (as needed medication). This one comes in an injection form. That’s right, a shot. For anyone who knows me, this is a shocker. I do not get along with needles, I’m downright scared of them. Therefore, this goes to show the amount of pain I am in and what I will go through to get some relief. My husband would be the injector (yes I could do it in my leg but I don’t think I am able to convince myself to go through with it). This new abortive is only allowed twice a week and must be taken with an anti-nausea medication. It’s meant to keep me from having to go to the ER. I haven’t tried it yet because it has taken until yesterday to get the prescription. Here’s hoping for future relief!

On a happier note, I now am the happy and proud owner of a car. I have been without a car since the beginning of August and am very excited to have some freedom again. It is an older used car with some wear and tear but it is mine and it’s cute. I was able to visit with some family after my doctors’ appointments and when picking out my car. It was great to see them again, though exhausting. I came home and crashed on the sofa and/or bed for the next two days. Noise is my greatest enemy these days and the combination of pain and fibromyalgia wears me out. I also have trouble with fast movement and jarring (like going over bumps when riding in a car). Unfortunately I haven’t gotten out for a walk since getting home but I hope to very soon. My doctors really encourage walking and it does seem to help lift my spirits.

I’m now resting up for Thanksgiving. I have a great deal to be thankful for and am so happy to be able to celebrate with my family: my husband and kids. We have our traditional delicious meal planned and I have had offers for lots of help. That will be greatly appreciated. I hope you and yours have a fabulous Thanksgiving and remember to give thanks! Happy Thanksgiving.

A New Combination of Medication Please

November 13, 2016

After 11 months of experimenting with various combinations of medications, the doctors still cannot find one that brings my pain below a 3 in a pain level of 0-5. I have gone to the ER twice in the last two weeks and my average pain level has been running higher than usual. I am anxious for my next appointment, hoping for a better med combination. I had also been given botox for the pain the first time September 01, 2016. I haven’t noticed a great improvement but was told that it may not be noticed until after the second round, which is scheduled for December 9th. I don’t know if you have ever had botox. I was told that the shots are like a bee sting. I received 30 shots in the neck and head; half way through I almost passed out! With my trigeminal and occipital neuralgias my head is very sensitive, therefore the shots were much more painful than usual. Needless to say, I am not overjoyed to go through this experience again but I will try anything if it might bring my head pain down below a 3. Here’s hoping it works…

These past few weeks has been very painful, as I had previously mentioned. Even-though, I decided to get myself moving again. I have been having so many down (bad) days that I haven’t gotten much exercise. I have gained about 30 pounds since this head pain started; pain medicine and lack of exercise are the greatest culprits. So, I started walking again. I walk my dog (Kira, a basenji) around the neighborhood. I have a goal of walking 3-4 times a week for at least 35 minutes. I wish I could get back to yoga but any position where I have to lower my head is not doable. Although I am a vegetarian, I struggle with my weight. My biggest problem is how hungry I always am. I feel like I have tried all of the tips and tricks to no avail. My doctors tell me not to worry about my weight right now but it is difficult not to think about it when the increased weight makes movement more difficult, besides I have plenty of time to think since I am unable to work or do much. 🙂

On a good note, my kids came to visit yesterday. We had such a good time talking and playing some games. We had a nice dinner together and I appreciated all of their help and company (my husband, Bob, was on a fishing trip). My family has been such a great support through all of this. Bob has done so much for me. I am very thankful to be able to rely on such awesome support. Being in pain all of the time makes me a little crabby at times and I forget to thank all of those who have helped and supported me. This is a good time to give a shout out to my Greenville Middle School family who brought dinners, gift cards, and gifts during my first few months of going through this process. I wouldn’t have gotten through without them. I am so blessed to have such wonderful family and friends in my life.

Introduction

Hello, I’m Lori. I have been diagnosed with head pain last year, December 2015. I have trigeminal neuralgia, occipital neuralgia, a tumor on my pituitary gland, and undefined migraines. I’ve had severe constant pain since December ranging from 3-5 on a pain scale of 0-5. This has been a long road so far, though I realize others have had pain much longer.

I am hoping this blog will help other sufferers (and/or their friends and relatives) find encouragement and possibly someone to relate with. My plan is to post at least once a week. Please feel free to contact me by responding to my blogs. I love feedback and making new friends.

A little background about myself. I have been married for 29 years to my best friend, Bob. I have two awesome children, AnneMarie and Max. AnneMarie has been married now for two years to Andy, and Max has just graduated from Central Michigan University. Bob and I have had an empty nest for a few years.

I have recently retired under disability from teaching mathematics at our local middle school. I also have taught mathematics at our local community college. I have earned my BS in mathematics and my MEd in Secondary Mathematics Education. I have not worked since January 29, 2016 due to pain. I had helped develop my position at the middle school, teaching struggling mathematics learners in the middle school. I was researching this same subject and working on it as a dissertation for my doctoral degree, which I have dropped from.

With the loss of my job, I have also lost my car (Taurus Sho). I loved that car! Bob and I have had to do quite a lot of financial figuring to make ends meet. We have lost almost half our income and gained medical expenses and traveling expenses to regular medical appointments, which happen to be approximately 150 miles away.

There has been a great deal of adjustments to make in these last eleven months. I have done as much research as I can, though my abilities for such has lessened. I find it very difficult to read for more than a few minutes at a time and I struggle with focusing on any task such as knitting, painting, listening to books, conversations, etc. Such focus increases my pain greatly. I am no longer able to listen to music, go to hockey games, or do any activity that involves noise. Noise is my greatest trigger for increased pain. Along the way, I found that I have fibromyalgia. This along with my pain causes me to be less active. I have gained 30 pounds since March. My doctors tell me its partially the pain meds and partially the inactivity but not to worry about it for now. It is difficult to ignore and makes getting around more difficult also. Seems to be a double negative which does not equal a positive because we are not multiplying here (sorry, math joke).

There is so much going on in my mind and so little I feel I can physically accomplish. More to come later…