Sunshine and Starbucks

Whoohoo! Woke up this morning at 9a.m! I was still very achy so I stayed in until around 10a.m. but it was so good to wake up in the morning for once.

I'd had to take another painkiller at bedtime and once more during the middle of the night, but managed to get enough sleep in the hours of darkness. Thankfully!

Ran out and got a biscuit and a grande mocha frappichinno as a special treat. It was a beautiful, warm day and I just stood outside and soaked up the sunshine for a little bit. It felt good. The pain had eased off by around 11a.m. and I managed to get a little bit done around the house. Very little, but still a little bit. With a lot of breaks.

By 2:30p.m. I was exhausted, of course, and very, very sleepy despite the massive jolt of caffeine from Starbucks. So, I napped from 2:30p.m. until 4:30p.m. and woke up feeling good.

Yeaaaaa!

I called the dog groomer to set appointments for my shih-tzu and Australian Shepard and got her recording. There was a locked door in my brain though, and I could not think of my phone number for the life of me. Now, this happens to everyone occasionally and has certainly happened to me zillions of times in the past but you always remember it within a few minutes, right? Lordy! Not me. Not with this brain fog. All I could remember were the first three digits. Finally, I started calling all of my relatives to ask them!! I couldn't get them and called the groomer again and this time, thank goodness, she answered.

I still don't know my phone number. I'll have to ask someone. Now, that, ladies and gentlemen, is brain fog.

Another bizarro day in the life

Except for the general fatigue and malaise, I've been feeling pretty good the last week or so.

My sis and my niece dragged me out into the world Friday and Saturday and it was so wonderful getting out to a real restaurant and the mall and being around my two beautiful nephews. We had a great time and except for the usual rhinitis, I didn't have any problems at all.

I had run out of ranitidine by Saturday night, so I missed two doses, then forgot to take either the ranitidine or the Prilosec Monday morning. So, of course, by last night my tummy was torn up and three new fever blisters popped up.

Oh. The fever blisters are new to the tummy upsets connected with the disease. In the past, I've gotten them anytime my stomach was upset because of the flu or whatever, but I hadn't had one for a year despite all the tummy upsets since. Then, when I went through the bad spell recently, I had five! It sucks. Of course, it could have been a virus.

It's pretty bad when you're so sick so often that you can't even notice when you catch a virus!

Anyway, I was feeling much better this afternoon. I took my mom to shop at Target and while there I got my $4.00 prescriptions filled. While I'm grateful for Wal-mart for starting the $4.00 prescription program, I still have a lot of problems with them, so I choose to go to Target who matches the program.

And, boy, am I glad. The professionalism and service at Target was superb, while all my experiences with the Wal-mart pharmacy have been nightmares. So, I got my prescription strength ranitidine, loratidine (Claritin), and doxepin. I haven't ever taken doxepin yet, and will start in the morning. Also had the Klonopin filled, which should help me get my circadian rhythmn back. Klonopin is great when you are anxious and really makes you go to sleep. When I get the least bit anxious, my symptoms go haywire. Not being able to sleep at night when I want causes anxiety. I've been taking Serex (oxazepam) which is what I keep on hand when I need an anti-anxiety med and still need to function. It doesn't make me sleepy, it just makes me calm and eases my mind. Unless I'm really upset, then it really calms me down. It adjusts itself somehow to the level of anxiety being experienced. It will let me go to sleep even if really anxious if I lay down then, and I always wake up without a "trank" hangover.

Anyway, then we went to a little diner which has really excellent southern cooking. I had country fried steak with gravy, potato's and onions, steamed cabbage, and fried green beans. It was soooo good. But, I guess there was a trigger in there somewhere.

Ten minutes after finishing, the bone pain started. For some reason, it always starts in my right arm, moves across the back, then starts down to my hips and legs. Then my stomach started rumbling with the first signs of diarhea. My mom gave me a Tramadol which she had and made me take it before it got too bad.

That was a good thing. By the time I got home, I still had to go to bed for a couple of hours and I still hurt some, but it was nothing like the last time about a week or 10 days ago when I waited until it was bad before I took a Darvocet. Both times, the bone pain had occurred on days when I had taken a Cymbalta (yes, I dole them out to myself every few days or so), so Cymbalta does help the myalgia but has no effect on the bone pain when it hits.

The bone pain is crushing.

Anyway, now, about 5 hours later, there is a general ache in the bones when I move, getting a little worse so I'll probably have to take another painkiller before bed, the diarrhea has passed for the most part and I'm left with only a bad queesiness.

Still, I am getting out in the morning and going to the library. My family is helping me get out and about more, and that helps. It really does.

It also really helps when I hear from my readers. Thank you all. It inspires me and keeps me going to know that I am helping others by sharing my days and helps them to not feel so alone. Yes, there are others like you and like me suffering from this strange, bizarro illness. It's something that is so very hard to understand unless you actually experience it, and it takes time and patience for loved ones to understand sometimes, not to mention the medical community. But, we can understand one another and we can all help one another through another day, every day.

So, please, let me hear from you. Post your comments or email me at livingwithmasto@aol.com.

Wow!

Wowzers, we are getting about 70 hits a day here now. Hope folks are finding the linkages helpful.

Please feel free to leave comments. I'd really like to hear from you.

Whining again

Well, I wasn't posting because I was sick until I wasn't posting because I was feeling pretty good.

Unfortunately, one lingering side effect from going through a long phase of being sick to the point of taking to my bed at all hours around the clock is that my circadian rhythmn gets all screwed up for weeks on end afterward. I just haven't been sleeping at night, for the most part. Even when I take something, I cannot seem to get sleepy until the sun rises.

So, I end up sleeping most of the day, getting up in the late afternoon and by the time I'm well awake, the sun is setting. I simply cannot make myself do my household chores at night. I try, but end up doing little more than piddling around. Coming after a long spell of simply not being well enough to accomplish much, I end up with a very messy house, a ton of laundry, and badly in need of a dusting and vacuuming. The dust is a problem and starts to make me feel badly again, and I know that as soon as I do get the dusting and vacuuming done, it will stir up so badly that I'll end up being very sick again for at least 3 or 5 days, even though I take precautions like wearing a face mask and showering immediately afterwards.

It's a vicious cycle and it sucks. No one in my family is in a position where I would even consider asking for help. My mom is 82. My sis works full time and has a heart patient husband. My niece has two little boys, one 2 and one 4, and a career. It would be so much better if I did not live alone. I wish I'd managed to find a good man when I was in good shape as I can't imagine a guy wanting to take on such a pile of a ragheap at this point. Too bad that I'm neither of the inclination nor would it be legal to marry an actual maid!

Perking up

I'm coming out of a bad spell with my tummy and massive fatigue. Feeling better today and will try to pick up with some posts in the next while.

I want to add a list of medications commonly prescribed, as I see that a lot of people find the site on just such a search. Of course, only your doctor can know what will be best for you, and it will be with this caution that I'll list H1 blockers, H2 blockers, etc. I advise all to look to the very bottom of this blog for the info sheet from The Mastocytosis Society.

The Mastocytosis Society has accepted me as a member under their Angel program, for which I am very grateful. They seem to be a great group of people and I encourage everyone visiting this blog to go there first in their search for info.

Me. Lately,

Itchy witchy

Aaaarrrggghh! It's the middle of the night and I'm up again, this time because of the itching. There's always one symptom or the other that's giving me hell. Who knows why? It could be the stress of seeing the doctor, though it wouldn't be stressful for any normal person. She is a very lovely and caring doctor. I didn't feel stressed but that doesn't mean anything to my body.

Afterwards, I accompanied my 82 year old mom to her doctor and basically napped in the waiting room. I get so tired from nothing. Still, it was good to get out of the house. I simply have to and jump at the chance to go anywhere, although I invariably end up sick in some way from it. Not that I'm a gadabout. I don't dare go to the mall or anywhere I might encounter heavy doses of perfumes or dyes. About once or twice a month, I get out to a family dinner out, accompany someone on an errand. See a movie once in a blue moon. That's about it. I don't care. I'll go insane if I don't get out. Then we grabbed a bit to eat. I had fish. Perhaps I will have to eliminate all fish/seafood/shellfish. I dunno.

All I know is I've broken out in several new rashes. Just gave in and took an Atarax. From all the prescriptions I have, you'd think I take a pill every hour on the hour, but I very rarely take anything but ranitidine and Prilosec, and an anti-depressant. I'm very averse to taking medication, especially since it is what got me in this situation to start with. I go for spells without taking an H1 blocker and only do so when I must. I did get RX's for all that I should be taking, and some are the Wal-mart $4 prescriptions so I have no excuse for not getting and taking them. And I have renewed my intention of pursuing the PPA program Rx's. I don't know why I am having such a problem taking care of that. I think it seems like charity to me and I have always hated to ask for anything from anyone, but I've really got to get over that. And I will. I will. I swear.

Oh. One more thing. I've noticed recently that the ends of my nails are turning downward, drastically. This is weird. My nails have never done this before. I asked the doc if it meant anything and she couldn't think of anything. So, I looked it up on the internets. Supposedly it MAY denote heart, liver or respiratory problems. My heart was thoroughly checked out a year ago. I have asthma that kicks up periodically but that has never made my nails do this. That leaves liver. Maybe masto is impairing my liver functions. I don't know. I don't want to think about it. My best solution: Cut the damn nails off to the quick and toss 'em into the river of denial. Don't really have much of a choice otherwise.

Atlas Lifted

Taking Cymbalta for a week now has really helped me get my head screwed back on better, and it has lifted the immeasurable heaviness that seems to sit on my shoulders when depression grips me. The fatigue is still around, but it is easier to bear without the weight of the world on my shoulders. I've gone from sleeping with a few hours of wakefulness to being wakeful with a need for two two hour naps a day, which might sound like a lot, but is a vast improvement. Most days I have awakened fairly early in the morning, and when I've awakened, I've been awake rather than in a stupor.

I did have quesiness and some stomach upset the first few days, but I was having it before being in the midst of a spell of gastronintestinal symptoms so I cannot say for sure that it contributed to it. It has faded now and I've only been having the regular stomachaches.

The myalgia is much better, but I have no idea if the Cymbalta has anything to do with it. It comes in spells and can last for weeks, then passes for the most part. I'd have to be on Cymbalta for several months before I'd really know. I have still had the pain, but mostly only when I've been out and about, going to the grocery store, running errands or visiting relatives. The ads for it on TV do say it's supposed to help pain associated with depression.

It's a serotonin and norepinephrine reuptake inhibitor. The Wellbutrin I've taken for years is a dopamine and norepinephrine reuptake inhibitor. I had the bone pain while on Wellbutrin, but not as badly as recently while I've been off and since it's been better with the Cymbalta, perhaps the norepinephrine may help.

My brain fog is a little better also. The brick wall in my head seems a little more mud brick rather than concrete block. I actually enjoyed watching Jeopardy tonight for the first time since I can remember. I used to love to watch it, trying to beat the contestants and doing quite well, but since I've been sick it's been an exercise in frustration. I might as well have been beating my head against the wall. I know I know the answers but couldn't answer for the life of me. Tonight, I actually came up with a few answers while the show was still on. Triumph!

Attention-Deficit/Hyperactivity Disorder
Norepinephrine, along with dopamine, has come to be recognized as playing a large role in attention and focus. For people with ADD/ADHD, psychostimulant medications such as Ritalin/Concerta (methylphenidate), Dexedrine (dextroamphetamine), and Adderall (a non-racemic mixture of amphetamine salts) are prescribed to help increase levels of norepinephrine and dopamine.

I've also found this link to be very helpful. I did not know that fibromyalgia also caused brain fog. The rhematologist said that I had strong indications of fibromyalgia but that it might be the symptoms of mastocytosis also. I know that I had severe pain in probably 85% of the places she touched. I was very surprised to feel pain in most of those places, since I had simply felt pain seemingly everywhere. In reading the personal stories of a few masto patients, I've seen that several had also been diagnosed with fibromyalgia. There must be a connection.

If I get a chance, I'll ask the doc on Tuesday, though she probably won't know. I had to reschedule from Thursday due to the snow storm we had.

UPDATE: Cymbalta is commonly prescribed for fibromyalgia with depression. See here.