A Chocolate Donut

December 21, 2007

Allergies..Bleh!

Filed under: CPAP, fibromyalgia, health, life, rant, sleep — Wizus @ 12:28 am

In the last 16 months I have had 5 sinus infections..the only sinus problems I have ever had in my entire life.  I have been achy and sick, moody and tired, with itchy, watery eyes, stuffy nose and headaches.  My doctor told me it is from allergies, funny thing is, I am not allergic to anything that I know of.  In all my 42 years I have never had hay fever or any reaction to foods.  If I am going to need to use nose spray everyday just so I can breathe, then I want to know what am I allergic to.  So off to the specialist I went.

Allergy testing is kind of fun.  They draw boxes on your back and then prick each section with a different substance.  It doesn’t hurt and kind of tickles on the ribs.  The first test were all negative so I went back 2 weeks later for another round of tests with the same negative results. Then I had 5 tubes of blood drawn to test for various food sensitivities and that all came back negative too. So what is causing all these problems with my nose? I get tested for something else…mold.  All sorts of mold.  Twenty pin pricks worth and more blood tests!  Can you guess what I found out?  Yes, I am very sensitive to mold and fungi.  All sorts and kinds…ringworm, athlete’s foot, the stuff that grows on food and the kind that can show up in the bathroom. 

Talk about a lightbulb moment!  I have been living in my house for only 18 months.  I had the first sinus infection a few months after moving in, then one every 3-4 months.  I think I keep a clean home but the house is 20 years old.  We do a little investigating and we find mold in the walls! In the ceiling! 

I tell you, I am actually relieved.  I know it sounds crazy but all I wanted was to know what was causing my sinus problem and how to fix it.  It is not as bad as it sounds because we had already made our plans to remodel our home.  We have blueprints and a building permit, we just needed a nudge to stop the procrastination.  We moved out of the house (yes! moved! just wait till I show you what we are doing to our house!) and I am doing so much better…so much so that I do not use the cpap any longer!  No more swollen sinuses! 

I am so glad I insisted on finding out what type of allergy I have.  Maybe if I had lived with hay fever all my life I would have settled for the generic “you have allergies” diagnosis and never known I am so sensitive to mold.  I would have used the sprays and antihistamines everyday and just lived with it.  I would have blamed the headaches and flu-like achiness on fibromyalgia when it wasn’t that at all.  Now that I know the culprit I can deal with it!  

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November 20, 2007

I’m useless today

Filed under: family, fibromyalgia, health, life, rant, sleep — Wizus @ 2:52 pm

I don’t know why I want to do nothing.  I am not tired, I am not in any pain or discomfort, I just don’t want to do anything.  I have a list 2 pages long in my notebook (damn that notebook!) but I cannot motivate myself into doing any of it  😦  I hate it when I get stuck in a funk that won’t let me be productive. 

Yesterday I managed to get a few things done that I didn’t want to do…all of which involved going into Walmart.  I am lucky that my local store has 1) a branch of my Dad’s bank  2) a mail center  3) groceries and 4) a pharmacy.  I feel like I accomplished a lot in one stop because that took a few hours…yes hours.  What is amazing about this store is, if I had had more time, I could have also gotten an eye exam, my hair cut and had our family’s portrait taken for out greeting cards!  Bummer, they are still on my to-do list.

I have a love/hate relationship with Walmart…I like the convenience of the store, but I find it weird that I am never greeted by a “Greeter”.  Even when my kids were small and I needed help with the cart the “Greeters” would ignore me.  No one believes it until they walk into a store with me…then, as if on cue, the “Greeter” will turn to talk with whomever happens to be behind them at the time.  If I have a return I have to ask them for one of those stickers they like to put on incoming merchandise because they will just let me go on in without stopping me.  Hubby and my friends are amazed.  I asked them if I have an unconcious “Don’t talk to me, bitch!” scowl on my face that scares the greeters away, but they promise me I don’t.  I’ll chalk it up to being one of my *gifts*, I am “Suzi, the invisible Walmart shopper!” 

Three days before Thanksgiving and I survived the Walmart parking lot,  being ignored by the “Greeter”, the business of taking Dad’s death certificate to the bank and straightening out a social security mess, mailing life insurance information to ungrateful brothers, buying a few fresh food items for dinner (for the remainder of this week, I advise only go into a grocery store if it is an emergency!) and made it through a check out line a mile long…so what is my problem today?  I just want to veg.  I want ignore my responsibilties, maybe turn on the TV to see what poor sap Dr. Phil is going humilate today.  

 :sigh:

November 7, 2007

CPAP is here!

Filed under: CPAP, fibromyalgia, health, life, sleep — Wizus @ 7:25 pm

My Continuous Positive Airway Pressure machine arrived today!  I have mixed feelings about wearing an unflattering piece of headgear and being hooked up to a machine all night.  On the one hand, it is ugly and not very comfortable…but on the other I don’t want to rob my body of the oxygen it needs. 

When the airway is blocked and breathing stops during sleep, you are being momentarily choked or asphyxiated, and the sudden drop in oxygen level causes carbon dioxide levels in the blood to rise. The body tries to protect itself from harm by making the heart work harder to move the remaining oxygenated blood through the body. So, your heart rate increases too. ~respironics.com

The results from my first sleep study showed I had a mild sleep apnea with  AHI 11 and  oxygen saturation of 92%.  My doctor told me that I didn’t have any instances where I would miss a breath, but that I have very shallow breathing…I’ll take that as a good thing as the whole ‘stop breathing in your sleep’ thing is very scary!  Most people with only mild sleep apnea can get away with using a mouthguard that would help keep the airway open.  Since I take medications that cause drowsiness my doctor is afraid my throat muscles could become too relaxed which would make it more difficult to breathe.  So, he sent me in for a second sleep test to try out the CPAP machine. 

I slept much better during the 2nd study than I did at the 1st, mostly because of the Rx I take that help me sleep.  Plus, the second time around I felt more at ease since I knew what to expect.  I was able to try out the different types of masks available for the CPAP machine and I picked one that just goes under the nose (there is one that covers the whole nose and one that cover the mouth and nose).   I think the one I picked works the best for me because the pressure was more direct into my nose and with my sinuses giving me so many problems lately I finally felt like I was breathing “right” again.

I really have high hopes that I will wake up feeling much better than I have been!

November 5, 2007

A series of unfortunate events.

Filed under: fibromyalgia, health, ic, life, rant — Wizus @ 2:32 pm

Last Tuesday my doctor informed me that I have what is called “interstitial cystitis”,  IC for short.  She did a test in the office that included inserting a catheter “the size of uncooked spaghetti”, as if knowing that was going to make it any better.  Anything going into my bladder from that direction is not good.   I then had to rate how I felt after she put a solution into my bladder, she drained the solution and put in another one, drained the 2nd solution then put in something that was supposed to “soothe” my bladder and whatever I felt I had to try and hold it for at least 30 minutes. Well, after that ordeal I couldn’t “go” for nearly 6 hours.  Now they expect me to go into the office 2 times a week for the next 3 weeks to have the soothing ‘cocktail’ inserted via the spaghetti sized catheter.  I really don’t think I am up to torturing myself in this manner.

She also gave me instruction to eliminate some foods from my diet and proceeded to name 1) everything I had eaten that day…bananas, orange juice and yogurt…2) everything I was planning to eat for the rest of the day…tomatoes and spicy food (spaghetti sauce and meatballs)…and 3) every beverage known to mankind…coffee, tea, fruit juice, soda, wine, beer and liquor.    I am a creature of habit so this wasn’t going to be very easy for me. I like what I like and if I can’t eat it it is hard to find a substitute but that night I ate the spaghetti (the irony!) with no sauce, my salad with no dressing  and washed it all down with a nice cool glass of water.  So far so good.  I was going to be fine with the diet, it is only temporary, I will begin adding foods back in after a few weeks and see if anything was a trigger food that made the IC worse. 

Friday I had an appointment with my allergist.  It was my second round of the skin test to see what was causing the allergy symptoms I had been having for the last 15 months.  It had become a serious problem because I have never had any allergy problems, yet for the last year my sinuses have been stuffy and swollen and I have had 5 sinus infections..the only 5 I have ever had in my life!   I had already had a scan of the sinuses done to rule out any abnormalities there.  I think the stress of it all was wearing me down and I woke up that morning just aching all over. 

I cannot believe it…I am having the horrible fibromyalgia pains that I have not felt for nearly 3 months?!  I had even gone to Hawaii last month and spent 4 days swimming, hiking and even paddling an outrigger and not once did the fibro pain come back.  What is so different now?  I’ll get out the yoga mat and try to relax… I convinced myself that it was tension and eased the pain away…

It was hard for me to sit still while the allergist is discussing the results of my tests, my body was aching and it made me restless…for this second test nothing was positive and the first test showed only a few weak positive results.  He sends me for a blood test…5 tubes of blood! 

Between the 2 doctors I had 5 new prescriptions, 3 of which I needed to take at night because they cause drowsiness.  I decide to call the Xyrem pharmacist (it is a controlled med that is supplied by only one pharmacy in the country) and ask her if there will be any problems taking these together and she is worried about only one of them…it is a sixth one, a decongestant that I had been taking for the last 2 weeks.  I decide I am not going to take anything until I can get this pain under control.

Hubby comes home and he is worried.  The pain has taken away my appetite and my confusion about what I can and cannot eat worried me so much that I have only had water all day.  “Maybe your potassium levels are too low?” he suggested, “That causes muscle cramps, doesn’t it?”   A quick search on the Internet and I am not so sure that is it…it takes more than one day of no food to have low potassium levels.  I do more yoga but this time I don’t feel any better.  More stress.  Lucky for me I have my Xyrem, it knocks me out cold.  I hope to wake up pain free.

I get out of bed but my feet fail me and I fall to the floor, I crawl to the bathroom door. It won’t open. I am crying and I cannot understand what is happening or where I am.  Hubby sits up and turns on the light…that’s the closet he tells me.  I feel panicky because I don’t understand him…What? Hubby helps me to the bathroom and I want him to leave me alone. Everything is swirling and I cannot stand up straight.  I try to get a cup of water and just pour it all over myself.  My heart is racing and I am trying to catch my breath.  Please let this be a dream…

“Hypokalemia”…that’s the diagnosis.  Seems that the decongestant I had been taking interferes with the absorption of potassium.  Combined with the limited diet I had for the past three days and I am lucky it is not more severe. Did you know low potassium can cause cardiac arrest? That is very scary stuff!  Hubby has been so great to me, not only has he not said  “I told you so!”  but he spent the weekend taking me to my favorite restaurants!

It has been two days and I still feel a uneasy from the scare.  This morning I had my usual breakfast including a banana and orange juice and the best part…my bladder feels fine!  Maybe I won’t need to eliminate too much of my usual foods after all.  

October 28, 2007

Feeling good with fibro…it can happen!

Filed under: fibro, fibromyalgia, FMS, health, life — Wizus @ 11:13 am

I almost feel like my old self again! I cannot believe how good I have been feeling since I started the new drug.  It has been a long road to get to this point (3 years from diagnosis!), but I am so happy to have finally found a doctor that really understands how to treat it.  

Everyday I have one or 2 people read my post  “Fibromyalgia sucks”. The search term “fibromyalgia” is in my blog stats everyday and I wonder, how many people are looking because they have it too?

If you are one of those people, and you are having problems finding the relief you are looking for, I suggest checking to see if there is a clinical trial near you. The drug trial I signed up for (and is the one I am using now that I am off the study) is Xyrem.   Xyrem is not a new drug, it is already widely used to treat narcolepsy.   My doctor had me do a sleep study and the results showed “alpha intrusions” which means deep sleep is interrupted by bouts of waking-type brain activity.   I found an article at medscape.com written in 2003 about the connection between sleep, FM and the use of this drug (I tried to link it but the site won’t let me).  I even found one dated 2001 but it was short and too technical for my liking, but I find it interesting (and sad) that this connection was made so many years ago and the treatment is still in clinical trials!

I never thought I would feel this well and it has been only 3 months since I started treatment.  I have been afraid to make a new workout schedule.  It has been 13 months since I last attempted my running routine and that was a disastrous 2 weeks of hit-and-miss run/walks; exercise one day and spend the next 2 days paying for it, repeat, quit  😦    I have been trying to get back into yoga but even without pain, the stiffness is still there so I get frustrated with the poses I can’t do yet.  I keep telling myself to check the attitude and just do it, but retraining my brain is not easy, either!  After all these years I can hardly believe I am feeling this good!

August 2, 2007

Good night?

Filed under: CPAP, fibro, fibromyalgia, FMS, health, life, sleep — Wizus @ 3:55 pm

My doctor had me participate in a sleep study last night. This is where you go to a sleep “lab”, you get hooked up to a million sensors, the tech tucks you in and then goes to another room where he can watch you on a video monitor. Needless to say, I did not get much sleep last night.  😛

Tonight I get to start on a new medication, which ironically is the stuff I was going to test in the Rx study. The dr. says it is better that I am not in the study because he can prescribe a better dose for me, and I know I am not getting the placebo. He wrote a letter to my insurance co. and they are going to cover the costs even though the drug hasn’t been approved for treating fibro.

I won’t know what the results of the sleep study are until I hear from the dr, but I hope this med will have me feeling better very soon.

July 18, 2007

Lab Rat

Filed under: fibro, fibromyalgia, FMS, health, life — Wizus @ 2:50 pm

I spent a long month working with a neurologist doing a drug study to help people, like me, who suffer with fibromyalgia.  I had a complete physical, including the dreaded pressure-point test (that brought me to tears, ouch!), and an EKG. I even gave up some bodily fluids and had a drug test and alcohol screening.  The icing on the cake was I had to completely stop all current medications and keep an electronic journal of my pain and fatigue. After numerous visits today is the day I would receive either the drug, or the placebo..or as it turns out, nothing!

Why? Because I am not in enough pain to continue with the study!

I am very sad about this.  I think pain is very arbitrary. I am always in pain, I am used to it. What I consider a 5, someone else might consider an 8, or vice versa.  The doctor explained that some people are in considered to be in too much pain to continue the study as well. The first thing I did when I came home was pop a Tramadol pill. Normally I reserve the pain pill for bedtime, but after a week with no pain relief I wasn’t about to wait another 10 hours.

That is the bad news, the good news is I finally have found a doctor that is a fibro expert! A skilled professional who can really help me!  He accepts the health insurance I have and wants me to continue with him as a patient. He already has ideas on what to do that will really help me. He really believes in the drug he is testing because of the positive results he has seen with it, but until it is approved for this use the insurance companies won’t cover it.  Out-of-pocket it would cost $800 a month.  Yes, I said eight hundred American dollars.  So, this doctor has other ideas to try first and he says, if push comes to shove he has been able to get some ins. cos. to pay for it in special cases where nothing else will work. 

I have hope…hope!!!!   I am going to be feeling better soon, I just know it!

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