Happy Again

So, before I tell you guys why I’m so happy, I am going to update you a bit on my medical issues.

I went back to the rheumatologist and they re-did my bloodwork because last time it showed high levels of inflammation. Luckily though, it was negative for lupus and the other diseases they are able to test for. The results of the new bloodwork still showed high levels of inflammation, so the doctor started me on a medicine called Plaquinil. I will take it once a day and they will recheck my levels at my next visit. I am excited about this medicine because I am unable to take medicines from the NSAID family which is what they usually use for inflammation. I didn’t know there were other options. The only thing is that I have to make sure to get my eyes checked every year while on this medicine.

Secondly, I have had a really bad cough for a while now. After starting a new medicine called Symbicort the cough still hasn’t gone away. So the other day the doctor gave me a shot of a steroid and prescribed a course of Prednisone to help clear out my lungs.

This is where we get to the happy part. Somewhere between the Prednisone, my thyroid medicine and the Plaquinil, I have actually had ENERGY! For someone with fibromyalgia and chronic pain, this is a big thing. I am always extremely fatigued, so having a bit of energy has felt great… I feel almost normal. It is so exciting! Add to that the fact that it has actually been peaceful in my home for about a week and that makes one happy Joy. If it could only be this stress-free all the time! Lastly, I treated myself to a pedicure the other day so I have beautiful feet! I am thoroughly enjoying the peace, my energy, and my pedicure.

Too bad I can’t stay on this medicine all the time. That would be nice. It has been so long since I have felt normal. Don’t get me wrong, I still have the chronic pain, but my energy level is definitely better. I only have a few days left of the Prednisone, so it is very possible that my newfound energy stops with it. However, I intend to enjoy every minute of this feeling. It’s been a long time since I’ve felt this good, so I will cherish every minute of it. Don’t worry, though. I am trying to pace myself to where I won’t overdo it. Today has been a day of rest except for a quick trip to the store.

I hope all of you are as happy as I am right now. Oh, and do something nice for yourself. You’ll be amazed at how great it makes you feel!

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A Veteran with Cluster Headaches About to Lose his Home

 

 

In honor of migraine awareness month, let’s help out a U.S. Veteran and migraine sufferer. Read the entire article for more details.

Migraine Discussions

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If you read the news you know the Veterans Association has been under a lot of scrutiny lately for how it has been operating and taking care of our veterans. It’s so bad the head of the VA is actually fighting against requests for him to resign which I think he should immediately. The way our veterans with chronic illness, especially neurological disorders gained during their tours of duty is egregious. There’s just no way to justify the neurological stigma that has seemingly penetrated the VA!

I want to tell you a story today in honor of Migraine Headache Awareness Month and our veterans about the VA’s ignorance. You might know Cluster headache and Migraine advocate John Beebee if you’ve ever been to Headache on the Hill. He can often be found laughing and doling out hugs amongst his friends in the Cluster Busters advocacy group which I was a…

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My Migraine Story

In honor of Migraine Awareness Month and my friend Michael Fernandez (a migraine sufferer and patient advocate) migraine discussions.com, I have decided to share my migraine story.

My migraines began around age 17. I had many triggers back then, but the one I remember the best is pepperoni. If I ate it cooked (like on a pizza) I would get a terrible migraine, but if I ate it raw (like they sell it in packs at the store) I wouldn’t. I never could figure out how that worked. Anyway, I tried many medications, but the one that helped the most back then was the sumatriptan injections. Back then the medicine was new and cost me a hundred dollars for two injections. Luckily I worked at the time and could afford them. At one point, though, I was having up to three migraines a week. I even went to the ER because of them on a couple of occasions. Literally anything would set them off.

At age 19, I had gastric bypass surgery and the migraines mysteriously stopped. I might have one once a year or once every two years, but nothing compared to before the surgery. Since the timing was right, I thanked the surgery for curing me, but later found out that it was just good timing.

In 2011 my migraines returned with a vengeance. I went to see a neurologist and I was told that sometimes migraines will go into remission for a while, but they usually end up showing back up sooner or later. This time, though, I seemed to have only one trigger…the sun. Anytime I went outside that summer I would get a migraine. I tried sunglasses, but just couldn’t find ones dark enough to shield me from the UV. Luckily after that summer the migraines eased up a bit, and I could go out in the sun, but if I stayed out for a good length of time the migraine would set in. My new neurologist started me on preventative medications that first summer that really seemed to help by the time the second summer rolled around. I also began using a medicine called Maxalt for when I would get a migraine. I still use it to this day if I think a migraine might be coming on. As soon as the headache starts I can take the Maxalt and it keeps the migraine from getting too bad.

I still get migraines now, but they are much weaker than before. Sound and light still bother me, but it is out of the ordinary these days for it to get bad enough to cause the nausea and vomiting that it used to. I would still love to find a good pair of sunglasses to help me with my sensitivity to light. I wear prescription eyeglasses, but after asking around found out that when the optometrist puts the UV shield coloring on, it really doesn’t get that dark. If I could find a pair of glasses that truly helped, I might look into wearing contacts again. I had to stop at one point because I take so many medications that my eyes stayed too dry to allow me to wear them. I would love to find some glasses that could be made according to my prescription strength, but I’m afraid to think of how much they might cost. Another problem I’ve run into is finding frames that cover enough of my area of vision. Usually the sun still seeps around the edges of the frames.

Even though my migraines have gotten better thanks to the preventative medications, I’m always scared of the day when they might return again with the same intensity as before. Here’s to hoping that the meds keep them at bay.

Bye Happy Joy

So, happy Joy didn’t last very long…as usual. I’m so frustrated. So tired of having no support system. Tired of being made to feel like I’m worthless and some kind of druggie because I am sick and have to take medication. I woke up this morning to a barrage of insults about how nothing is ever done around the house…about how I just stay in my room (hell yeah! It’s the only room with AC) and take medications and smoke cigarettes. How can he say anything when he smokes and takes medications? How is it possible that he doesn’t understand that I didn’t choose to be sick? I didn’t choose to have to take medications, and I didn’t choose this life. All of this was chosen for me by a higher power.

So, as of now I have adhesions, fibromyalgia, prediabetes, hypoparathyroidism, and now hypothyroidism. It seems my body is attacking itself. The first to go was my thyroid. What will be next? Hopefully the rheumatologist will be able to figure out what kind of autoimmune thing is going on when I see him next week. But all in all it really doesn’t matter. I will still be seen as a lazy, good for nothing druggie. Sometimes I wonder how different my life and illness would be if I had a support system and less drama. I think it’s time for another trip to my sister’s. I really don’t want to be around any of this right now. I shouldn’t have to put up with someone trying to judge me and insulting me.

The Cherry on Top

I had an appointment with my endocrinologist the other day. I see him for prediabetes and hypoparathyroidism (extremely low Vitamin D deficiency). We make time for each other every 6 months where he checks my bloodwork (that I get done 1 week before my appointment), tells me everything’s looking good, and then I go home. Well, that’s the way it has been the past year…

Monday, however, was unfortunately not my usual easy appointment. He takes a look at the test results, and circles something before continuing down the list. At that point I was thinking to myself that maybe my Vitamin D levels were off again or maybe it was my A1C and I should be checking my blood sugar more often.

Well, imagine my surprise when he asks me if I’ve been taking my thyroid medicine! I was like, WAIT…you never prescribed me any thyroid medicine because you said that my thyroid has always checked out. Turns out that what he had circled was the results of the thyroid test. He checked back at the past labs before saying, “yes- you’re right. Before the levels were always normal. Today, however, it seems that your thyroid is not functioning anymore.”

WHAT? That was the last thing I expected to hear. So he checked my neck (where the thyroid glands are) and said that they were swollen. I had actually noticed that the area had been sore for a while, but I assumed it was because I smoke, or maybe because I was getting sick…not realizing that I never came down with anything.

The thyroid gland controls the way your body uses energy, like your metabolism. The symptoms of hypothyroidism (not producing enough thyroid hormones) are a lot like those for fibromyalgia. Low energy levels, tiredness, weakness, trouble dealing with cold temperatures, and memory problems (or trouble thinking clearly). So I assumed those were all because of the Fibro. Also, it can cause dry hair, dry skin, constipation, and hair loss. I assumed the dry hair and skin was just a byproduct of the extreme colds this winter and I deal with constipation because of the adhesions and pain medications. The hair loss I didn’t really think much about because I have really thick hair and always shed. So see, there was no symptom that was really out of the ordinary for me. Add to all this the fact that when something is wrong I can usually tell, but then it is a matter of getting a doctor to agree with me. It’s sad that things are that way, but it’s true. I forget sometimes that I have composed a great team of doctors (the jury is still out on my GP, though lol) and don’t really have to worry about that anymore.

Suffice it to say that I was STUNNED that something is wrong with me and I didn’t realize it. It also bothers me that the inflammation has caused permanent damage to my thyroid and I will now have to take thyroid replacement medication for the rest of my life. I mean, it’s not like I didn’t already have a laundry list full of different diagnosis…now I have one more that will follow me around. One more invisible illness to have to manage.

So yeah, when the doctor told me all of this, I said “well isn’t that just the cherry on top?” One more thing to have to deal with. I am, however, looking forward to the fact that once the thyroid levels are regulated I may get a little bit of energy back. I really miss having energy! What I am not looking forward to are the doctors appointments every two months until we find the right dose of medication or the new pill I will have to take every day. At this point, all I can do is look forward to the sweetness of that cherry instead of the hard pit in the middle.