‘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?).

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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…