About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.
Showing posts with label DHE-45. Show all posts
Showing posts with label DHE-45. Show all posts

Friday, June 7, 2013

Friday Tidbits: My Three Daily Shots


Needles: I thoroughly hate them - I have a true phobia. I think that the Guy Upstairs has a very funny sense of humor because I need three shots daily. Or, perhaps, I lived a very strange sort of existence in a former life and my punishment is having to get so many shots in this lifetime.

People seem to be curious about medications our fellow sick ones take and I'm private about some things, yet share others.  A lot also has to do with how much I think others might want to hear, preferring not to bore people to death.  But it's Friday, I'm feeling cruddy with all that's going on, still with the nausea, recovering somewhat with the swelling and bloating, pain, you-know-the-drill, much of it still where I was last week.  I've had a few other problems that are getting to me but I'm still sitting on the fence as to whether anyone would want to hear about it or not.  Other things are driving me nuts: I'm trying to hold out and see if there is any rhyme or reason - hint: rashes and hives amongst other annoyances.

Hubs is out of town for a long weekend, I'm forced to give myself my own shots and so I finally decided I'd "go there" - that is, tell you about the three shots I dread so much that everyone but in the family but myself knows how to administer.  I should say that I'm so bad about needles that back in the day when the only way to get over a migraine - besides waiting it out - was a shot, my 13-years old daughter came to her dad and said, "it's about time you teach me how to give mom her migraine shot. You're not always around to do it, you know."  Or words to that effect.  That summer, bossy daughter and I were going to fly to Oxford and she wanted to make sure I was covered.  Have I mentioned lately that the girl's got guts?

Luckily, needles are not the only way to go in order to treat migraines any longer.  Those little pills are such a convenience!  I'm so bad that I prefer going through life with migraines than have a shot - or the occasional DHE-45 IV given over an extended period of time in the ER with hit-and-miss results.  See how ancient I am? It's as if I lived in the age before antibiotics were invented!  Not quite, but almost.

But the Guy Upstairs still has His joke with me on a daily basis with:
  • Vitamin B-12  Yes, I could go with the pill form, even the sublingual form, but that didn't work for me.  Despite getting B-12 the way the rest of us get it, back in 1997 my test results showed that suddenly I was extremely deficient in B-12.  In fact, I was low despite the IV nutritionals I was getting weekly at the holistic clinic I went to over two hours away by car, each week for a year.  The funny thing - not haha but strange - is that it takes two years for your body to make up the deficiency. Therefore, though the tests may come back with your level of B-12 - registering in normal amounts - and though the blood tests may reassure you, guess what!  Your cellular level of B-12 may still be low.  I now get a daily shot of B-12 and do get tested periodically to make sure that my levels are in the normal range, not too high, not too low.
  • Pitocin   I'm sure many out there with Chronic Fatigue and Immune Dysfunction Syndrome (CFS/ME), fibromyalgia and many other autoimmune illnesses have problems with vision changing day-to-day and even hour-to-hour.  But it's not a vision problem, per se.  Instead, it's the brain not able to interpret what the eyes see.  This makes sense to me (my case, that is) because of two factors. On my worst days, my vision is kaput. I can't get anything to focus right.  On my better days, my vision is not annoying, although unlike Goldilocks, it's never just right. 
Which leads me into a smooth transition. The second reason I get a daily pitocin shot is because "some" believe that it may be a pituitary problem. It's a bit much to go into today, so I'll address this in a future posting, soon.  It's a truly amazing thing that we've discovered, so it perhaps deserves its own post!  (Am I getting good at ya'll anticipating a post?  I'm tryin'!)
  • HGH (Human Growth Hormone)  I think I've gone on and on about this, more than most ever want to hear.  These  HGH posts are found here (weight gain),  here (impact on fibromyalgia) and here (hormonal impact/levels).  But as I've mentioned once before, my rheumy is really worried that the HGH deficiencies he's seeing in his practice are almost epidemic.  (I'm adding the "almost," and underplaying his concern and alarm.)
 
And off we go into another weekend!  As always, I hope everyone's doing their very best, only better!  Wishing you a wonderful weekend.  Ciao and paka! 


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Wednesday, March 21, 2012

Finding needles in haystacks while dieting.

Eating my way through England in the late '80's.


If ever any of my three (charming) kids to look at this post, a massive cry would arise, I just know it.  You see, they already think that I'm an eating well/healthy eating crusader, as well as a believer that food will cure all. Well, I'm not - not really.

...Although there IS my constant threat/dream to start a demonstration in front of every supermarket in the US with young women, mothers, grandmothers of the world united, carrying placards that declared that 95% of the food in said stores is dangerous to our health.  Hugely dangerous!  But I'm coming perilously close to digressing, and that's for another post, so on with it!  

I'm always amazed at how much healthier I feel after I've been eating well.  Actually, perhaps not "healthy," but instead how much cruddier I feel after eating "well" for a while, then sneaking in one of my "forbidden" foods and suddenly feeling incredibly worse...migraines, brain fog, huge pain, and the myriad of other symptoms and problems which then come out in spades and/or are intensified.  

I suppose the first time I really and truly noticed this was back in the early '90's.  I'd gone on a diet determined to lose the fat and poundage I'd put on after seeing a CFIDS specialist (one of a few already and one of many to come) who thought regular steroids would be the answer.  I'd made peace with the decision and since I was already bathed, dressed, made up and out of bed, hubby and I decided to stop by a department store on our trip home in order to buy some clothes that would fit me once I put on the inevitable at-the-very-least 20-pound weight gain I have always gotten from just one shot of steroids, as in the occasional bout with poison ivy or other nasty thing deserving steroids.  

Well, to make a long story short, my CFIDS, ME/CFS, fibromyalgia, migraines, insomnia, and so forth, symptoms got no better.  In fact, I would say that they got much worse.  And I did not have a 20-pound gain but a 40-plus pound weight gain.  Putting on all that weigh made it even harder to move around, the pain got much worse.  The migraines were so bad, in fact, that I was in the ER just about every week.  

In those days, the "best" treatment for migraines was a DHE-45 IV drip in the ER which took a couple of hours to administer.  It worked like a charm but was a pain because I have a phobia of needles and a good "stick" is hard to find.  But the ER docs got to the point where they could take one look at me, talk to hubby and immediately see if a quick Demerol shot would work or if I needed the dreaded DHE-45 infusion.  

I thought my migraines would be a cinch to deal with once Imitrex came out, in shot form.  Holy cow, was I ever wrong.  The migraine would go into stratospheric heights and knowing I sounded very crazy I nevertheless couldn't stop screaming from the worsening migraine that the Imitrex induced.  Then after about 6-8 hours, if I were lucky, the migraine would magically go away.  Too often, however, the migraine did not go away and I'd need a second shot, screaming, sweating, shaking, trembling...it was a sight out of "The Exorcist," minus the head turning. 

Back in the late '80's, the migraines had become so bad that my first lumbar puncture was done.  When elevated proteins were found in my spinal fluid, everyone scrambled about getting me scheduled for a CT scan, others were trying to figure out who would be doing a removal of my brain tumor because that's what an elevated protein level in the spinal fluid meant back then, whereas hubby worried how he'd miss his young wife and how he'd manage life with three little children who had no mother.  It was a scary 24 hours until everyone found out that there was, indeed, no tumor in my brain.  

On the other hand, when I was lucid enough to think, I was furious with everyone. I didn't have a diagnosis yet as to what was wrong with me, but I KNEW that something serious was going on.  How was it, I wondered, that the elevated spinal fluid would scare the heck out of doctors one day and not be a sign of anything wrong the next? Come on guys, use the brain God gave you, the logic college taught you, and the physician's training medical school gave you.  There IS some sort of problem.  It's not just a yes or a no!  

But everyone was happy, other than me, of course.  That was the infamous year when I spent more days in the hospital than at home, popping in and out of hospitals as if they were my home away from home.  Hospital dietitians particularly got on my nerves because they kept trying to trick me into diets I'd long ago surmised did not influence my health.  I'm sure there are exceptions to the rule, but one the whole, I've found that most hospital dietitians are the most ignorant group on God's good earth when it comes to food.  Think about hospital food for a moment and you'll understand what I mean.  

At any rate, getting back to the steroid fiasco, I stopped the shots and was determined to lose the 40 pounds I'd put on, not an easy feat.  For some reason, regular weight goes off rather well with determination, but steroid weight gain is almost an impossibility to get off.  It takes me at least a couple of YEARS to budge even 20 pounds.

But I heard about a new diet on one of those evening magazine shows and decided I had nothing to lose but weight, so why not try it?  

It was called "The Monignac Diet," "invented" by a Frenchman who worked in the US for an extended period of time, had a history of extra poundage he wanted to lose, and was horrified by French young ladies who spent time in the US and came home fat.  Nutritionists and dietitians around the world were divided on the efficacy of the diet, most very much against this new-fangled concept of a glycemic index, but given my opinion of nutritionists and dietitians, I thought that was reason enough to try it.  

The diet basically divided meals into ones which were fat/protein or carbs.  Never could the two groups meet. Furthermore, carbs were divided into "good" carbs and "bad" carbs.  There were also some "no-no's," such as sugar, corn products, potatoes (a killer for me since I consider potatoes "Russian/Ukrainian penicillin").  This is all a simplistic explanation, of course.  This was also my first venture into the low-glycemic world.  In fact, Montignac is now, after his death, known as the "father" of the glycemic approach to diet, eating, weight gain/loss, health and so forth.

Well, it was a surprisingly easy diet to stay on.  I lost 20 pounds but then hit a plateau - a plateau I could not for the life of me get myself off of.  

One night, complaining about the darn plateau, observant hubby suddenly said, "you know, you haven't had a migraine since you started that French diet."  I looked at him as if he'd suddenly grown a monstrous second head but I often give him that sort of look.  

"Think about it," he said.  This time he got a dirty look.  One of my hobbies is thinking...was he actually telling me to think when he's always telling me to think LESS???

Suddenly I jumped out of bed and ran to the dresser where we kept all of my migraine meds, including the dreaded needles.  My supply of needles looked full.  I checked the date on the Imitrex - and it was expired.  WAY expired!  I looked at the rest of my migraine arsenal and everything was old. 

This was way too easy.  Hubby said, "I think you may have lost only 20 pounds but more importantly, you lost your migraines too."  That was such a corny statement that he got another, deserved, "look" from me.

Not wanting to leave things well enough alone and being a contrarian, or just a person who likes proof, I looked at him devilishly and said, "I want a burger."  You see, bread, a carb, and beef, fat/protein, mixed together were a definite no-no.  Hubby looked at me as if I were nuts but knew arguing would do no good.  I finally ate my hamburger with extreme relish and got my migraine, in spades.  Too bad I hadn't planned things out: the migraine was one of my better ones and because the meds at home were all expired, a run to the ER was needed.

It took me some time to accept the reality that I had hit a cure for my migraines.  This was really huge.  As a child I got bad headaches but my mom believed that children don't get headaches, they just caused them - in adults!  I learned great coping mechanisms, one of which was washing floors, de-waxing and waxing floors on my hands and knees whenever I had a "headache" coming on.  I didn't even realize I was doing this but always had incredibly sparkling floors. 

All of this denial came to an end, however, when I went blind in one eye for a few days while in my second pregnancy. It was a migraine equivalent seen at times with women who suffer severe migraines.  I argued with my neuro-opthomologist that I don't even get mild headaches when my hubby came out a state of shock and said, "You ALWAYS get headaches!" Was I complaining but not hearing nor registering those complaints? 

After challenging the "French Diet" a few times, I realized that for me, at least, this was one answer to my migraine problem.  I've had good years and bad years as to how well I stick to this way of eating.  At the moment I'm not doing too well because of too many reasons to bore you with at the moment.  

But how incredible was the luck that led us to this "cure"?  Had we not been using needles back then and had Imetrix not intensified my headaches before ridding me of them, the connection might not have been made. Today, with a medication in pill form that works like a charm, I'm not as invested about avoiding the foods and eating patterns that lead to a migraine.  Pop that pill and forget about what harm I may be causing myself due to side-effects not even yet imagined.  However, now that I've put this in writing and told so many about it, perhaps I've finally given myself the push I need to get back on the French diet band wagon.  

Goodbye to my wonderful potatoes, my wonderful Russian/Ukie cure-all for a while.  Perhaps I'll have some mashed ones tonight as a farewell, right before I have a piece of sugar-laden cake for my wonderful daughter's birthday.  It's tough to say goodbye to those "poisons."