Aperture

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[bunnyears-blog]

Hey I found your blog and I thought I'd ask, today I discovered I have ms and I'm lost.. Mind if I message you?

Feel free to message me anytime. We can talk privately, You can also reach me at [email protected]

(((Hugs))) to you.

[bunnyears-blog]

I have been excessively lazy lately. Taking is very easy. Not taxing my body at all. I know my family has suffered because of it, so I decided, since I was feeling completed symptom free (Ok, not completely but as symptom free as I have felt in a long while), that I would cook a nice dinner for my family. 

I got the potato casserole together without much issue and started applying the dry rub to the chicken, when it started, my fingers started tingling. Just a little at first. Then a lot. Then it became that it was all I could feel. I could not feel the chicken beneath my fingers, I lost all feeling except for the tingling. 

Then I started trembling. My hands were shaking so bad I could barely place the chicken in the pan. 

My back started hurting and standing there was unbearable.

My left leg started going numb.

My feet started tingling.

I finished the dry rub and started making the barbecue sauce. That is when the nausea and dizziness started. I looked down at the floor. I saw the kitchen floor and looked over at the carpeted hallway, knowing it would be softer to land on if I fell. 

I grabbed onto the counter, closed my eyes tight and told myself I could make it to the bedroom. The sauce could wait a while. 

As I walked down the hallway to the bedroom tears welled up in my eyes as the all too familiar drag of the leg appeared. It felt like it was not my leg but rather a sand bag tied to my body that I was dragging behind me. 

I collapsed on the bed sobbing.

Desperate to understand why my body would not let me have a day to cook for my family, I called a friend to talk it out.

The conversation was like this... I will never be able to be a real grandma. A grandma that cooks a big Thanksgiving dinner with all the fixings and desserts and has all the grand kids around and spoils them with cookies and such. Not when I can't even cook a basic dinner for my kids. 

I'm not sure why my mind went there, it just did. Maybe because it is Thanksgiving time and I no longer do the whole Thanksgiving thing. Maybe because this year I declared I was not doing Thanksgiving. 

But for those of you without MS, this is what MS is like.

It is frustrating for us. We try. We do. We get angry over it. We get tired of it taking away so much from us.

If you have a loved one with it, know we want to cook for you, clean for you, go out to dinner with you. We are sorry for canceled outings, missed birthday parties, and family events. 

For those with MS. It sucks. I wish I had words of wisdom, but I have none. All I can say is I can relate. I know how bad days can get and how down you can get and on those days, just know you do have it in you. You may not think you do, but you do. And if you feel like you don't, if you feel in that moment that you can't go on. Stop. Go lie down. Go take a hot bath. Go cry to a friend. Do whatever you need to relax, restore your soul and rest your body. Realize that sometimes, despite what every fiber of our being tells us, sometimes we do have to quit for a while, sometimes we have to listen to our bodies and quit and rest and recuperate. And that, for us MSer, is the hardest thing to do. 

[bunnyears-blog]

Here is a great link for tips for helping with muscle spasms. CLICK HERE Many of them I knew, some I did not and others I knew but I tend to forget. 

It is worth looking at. It's not a list of expensive vitamins and so on, but simple everyday things you can do to help. No one thing will give us a miracle cure, but these are some add ons to our medications to help us through the rough times. 

The tip I love the most was a hot beverage for the girdle like pain, aka the MS hug. Who knew. I am gonna try it. Can't hurt. 

Again, CLICK HERE FOR THE LINK. 

[bunnyears-blog]

When hearing hoofbeats, sometimes it is not a horse but a zebra. Sometimes, it is even a unicorn.

If you have a current diagnosis of chronic or intractable Migraine, has your doctor talked to you about hemicrania continua?

What is Hemicrania Continua?

Hemicrania continua (HC) is a single-sided headache that does not go away and that rarely if ever changes sides, most often presenting with autonomic symptoms such as tearing or a runny nose that coincide with flares of increased pain activity. Unlike Migraine, patients often are agitated and active during their severe pain exacerbations, often even becoming verbally abusive. HC is said to be a cross-over between cluster headache (aka “suicide headaches”) and Migraine.

Appropriate diagnosis is critical because hemicrania continua is very successfully treated with one particular medication — a prescription NSAID – which can be life changing for the patient who has most often endured years of nearly constant pain and disability.

The (IHS) International Headache Society’s ICHD-II (International Classification of Headache Disorders most recent version) uses the following criteria for hemicrania continua diagnosis:

Description:

Persistent strictly unilateral headache responsive to indomethacin.

Diagnostic criteria:

Headache for >3 months fulfilling criteria B-D

All of the following characteristics:

unilateral pain without side-shift

daily and continuous, without pain-free periods

moderate intensity, but with exacerbations of severe pain

At least one of the following autonomic features occurs during exacerbations and ipsilateral to the side of pain:

conjunctival injection and/or lacrimation

nasal congestion and/or rhinorrhoea

ptosis and/or miosis

Complete response to therapeutic doses of indomethacin Not attributed to another disorder

It is noted in ICHD-II that HC may rarely remit, but is usually continual.

Treating HC

HC is considered completely (100%) responsive to therapeutic doses of a drug called indomethacin. Indomethacin is a potent NSAID with powerful anti-inflammatory and other properties. Its chemical makeup is close to that of the brain chemical melatonin. In fact, some patients who may not tolerate the significant side effect profile of indomethacin may in fact be responsive to melatonin either in conjunction with decreased doses of, or in place of indomethacin.

It’s interesting to note that there can be a lag time after beginning treatment and before the indomethacin is effective, and physicians are encouraged not to be shy about using a higher than *normal* dosage to be sure the trial is sufficient before ruling HC out.

Because of HC’s responsiveness to indomethacin, many headache specialists choose a clinical trial of a therapeutic dose (often suggested to be 75 mgs) of the drug in patients they suspect may have HC or a similar presenting condition such as chronic Migraine or chronic daily headache.

Indomethacin is known to cause significant gastric and other side effects.

Additionally, for patients with gastric stasis symptoms, absorption may be a problem. Headache specialists will often suggest patients bypass the oral route normally used for indomethacin, prescribing compounded suppositories to use in place of oral tablets. Injections are also available, but much less frequently utilized often due to cost, availability and patient compliance. Bypassing the oral route unfortunately does not eliminate gastric side effects, but they can often be proactively treated with prescription and/or OTC medications when indomethacin treatment is started.

Start a conversation with your doctor

Migraine (and chronic Migraine) is a diagnosis of exclusion, and because of its disabling nature, excluding an indomethacin responsive headache disorder like HC is something that should be done to be sure patients are receiving appropriate treatment. Most headache specialists are aware of this and are prepared to help their patients try the drug, however non headache specialists are often too quick to diagnose other chronic conditions or psychological disorder in the absence of such a test, to the detriment of their often disabled patients.

Proactive patients with chronic, intractable (does not respond to treatment) unilateral (one side only, with no side shift) headache, especially with autonomic features such as tearing or runny nose, will want to be sure to educate themselves about HC and use this information to begin a conversation with their physician.

The above information was taken from this website. Migraine.com

[bunnyears-blog]

The last 48 hours have been hell. A torturous nightmare. No way to escape the pain. Seems these cluster headaches are just increasing and no one can help. Well, they can but not until next year, January is the soonest appointment around here. I finally found someone out of state that can see me in December.

3 months of living like this. Can I do it? Can I care for the kids like this for 3 months. Do Halloween, Thanksgiving, school festival, book fairs, everything there is for 3 months with this demon on my back.

The only thing anyone will do is write a prescription for Zomig. It takes 2 to knock it down to bearable and that works for 3 hours. My insurance will only cover 6 a month. So I basically get enough for 3 headaches a month. I get these headaches nightly. 

Feeling so lost. So angry. I want to kill this demon. 

[bunnyears-blog]

As I sit here crying over yet another money/prescription issue I am considering dropping yet another medication. This time Ampyra. This one kinda scares me to drop. I felt so wonderful when I started taking it. Walking was easier. I wonder if it will just become even harder again. But what if it stopped working and I am back where I was. It is all so confusing. 

I have already cut out 3 medications and cut one in half. I have not let the doctor know this but will in my next visit. The rest of the medications I cannot stop without the doctor's help to titrate down. 

I feel so miserable all the time anyway. So sometimes I wonder why take any medication at all. Sometimes I wonder what would happen if I stopped them all?

[bunnyears-blog]

I used to be an open book about my MS. I never hesitated to share my story. To explain why I couldn't help out at the PTA or do this or that. It was not something I was ashamed of, but lately that has changed. It is not because I am ashamed of it, but I am tired of it defining me. I am tired of having it. It's as if I can reinvent myself. Pretend I don't have it and if others don't know I have it then maybe it will disappear. 

No, it doesn't make sense. Fact is, I am not really sure why it is. I just notice that I stopped telling people and am hiding it and I am not really sure why.

[bunnyears-blog]

As if I did not have enough to blog about with multiple sclerosis and gastroparesis, I now have a name to these evil headaches. They are cluster headaches. 

They feel like an ice pick is being stabbed into my eye repeatedly. It is excruciating. It is also called a "suicide headache". 

For anyone dealing with cluster headaches or wanting more information on them, this is a great site...

CH.COM

Anyway, to my fellow clusterheads... hello!!

[bunnyears-blog]

I hate my life right now. There I said it. No positive spin on it. No bright outlook. I hate it. It is all going to hell in a hand basket.

I just changed the sheets on my bed and ended up on the floor writhing in pain. Every muscle in my body went into spasm on me. EVERY muscle. My headache shot up to severe. My neck spasmed up along with my shoulders. My MS hug tightened up around my ribs and showed me who's boss. My arms and legs, fingers and toes. Even my facial muscles hurt. I am wracked in pain. 

I have not had a decent meal in a week. My kids have not had a decent meal. I struggle to get then to bed and up to school each day, I struggle to survive the day. I am not living life, I am merely surviving and barely that. 

I try to pretend I am ok. I post jokes on Facebook to show I am ok... but I am not ok. I am far from ok. But people don't want to know that. People don't want to see you lose it, see you be weak, see you not making it. But fact is, I am struggling and I have very little help and I am scared. I am scared and I am angry. 

[bunnyears-blog]

Just playing catch up. I need to get out with my camera again soon. I have been holed up way too long. But muscle spasms and headaches keep me confined to these four walls. Soon, soon I will get out. 

[bunnyears-blog]

Hey there! you don´t know me, I don´t know you, but I know that you are a wonderful person, inside out and I´m sure someone loves you for the way you are! Have a wonderful day!

Awww, thanks. Yes, I have to remind myself when I am down that someone loves me just the way I am. I hope you have a wonderful day too, and a wonderful tomorrow. 

[bunnyears-blog]

I think I miss your birthday? Sorry. How are you feeling today? Anyway, just wan to say Happy Birthday. Miss your pictures.

I am so slow to respond. Thank you so much for the birthday wishes. I was miserably sick on my birthday and my family tried so hard to make it special and took me our to dinner but I felt too bad to enjoy it. But the next day I went out with a larger group of family and it was wonderful. Awww, that was sweet to say about my pictures. I need to start posting again. Thanks for the message. 

[bunnyears-blog]

I often try to imagine what it is like not being in pain. I am lucky that at times my pain is more dull than others. But this past 10 days the pain has gripped me hard and not let up. I find myself wondering when or if I will get a break. I try all the usual tricks, relaxing, bath, quiet, distraction, but it is all short lived. 

I think the worse part is not the pain, but the continued pain, minute after minute, hour after hour, day after day. It does sap you soul, your spirit. It is extremely tedious to the point that even the simplest of task is daunting. 

My family and close friends see it. They see my spirit start to dampen. My humor start to fade, my passion start to dissipate. 

I fight it, goodness knows I fight it, and I will keep fighting it. But with each passing day it gets harder and harder. I struggle to be the person I want to be. 

But in the end I can't let pain win, for all it's effort, I can't let it win... and you can't either. If you fight pain continually, or even occasionally, never let it win. Never let it thin your spirit. 

[bunnyears-blog]

Facebook only shows the best of one's life. One rarely posts the bad side. So comparing your life to another's is a useless feat. I don't look at pictures and wish I had someone's house, or their body, or their man. (Shemar Moore is single so I don't have to envy his wife) ;)

But I do find myself envious of one thing, and that is their energy. I don't envy the things they do, I have plenty going on in my life, but I wish I had their energy to do all it is I want to. I feel I am failing my girls again. The fatigue has kept me housebound for the last 11 days. They deserve better than that. :(

[bunnyears-blog]

I have resisted getting an MRI for a year now, and it seems that doctors don't get why. It's not about the actual process. Yes, I hate lying in that tube for up to 3 1/2 to 4 hours for all 3 MRIs but it is the results I hate. 

Overall, it does not change facts. No matter what the MRI says, I am in just as much pain or have just as much trouble walking. But it can be so demoralizing. 

My last MRI was 2 years ago and I remember reading it. It was the first time they used terms like atrophied brain and atrophied cerebellum. The idea of my brain shrinking really hit me hard. As if it was withering away slowly. I was also taken aback by the fact that in a matter of 2 years my lesions not only doubled in size but increased 6-8 times in size, and the number of lesions increased by 50%.

For anyone dealing with MS, tests can often times be demoralizing. We focus so much on how to deal with the pain and symptoms, but not on the emotional aspects of it. On the fact that our body is attacking itself, attacking the brain, the very center of what makes our body function. How do you wrap your brain around... well what is happening to your brain?

[bunnyears-blog]

The MS hug is squeezing all the happiness and joy right out of me. Between that and fatigue all I can manage to do is lie in bed and cry. I hate days like today.

[bunnyears-blog]

You are who you are, not how others see you. I must remember that. When someone cuts me to the core, I must remember who I am and what is in my heart. 

It is hard at times. Especially when it hits so close and when it hurts. But if you know within your own heart your own thoughts, intentions, and your own self, then you cannot let other's actions make you doubt who you really are. 

I can't go chasing down people's own insecurities and jealousies. Their own issues is for them to deal with, not for me to fix. And when they take it out on me I must learn to walk away and not allow the sting and hurt to take away any part of who I am. 

That is the one thing about one's self. Only you truly know what is in your heart and you can't prove that to no one, nor should you have to.