Are endocrinologists are trying to kill me?

As you've noticed there was an absence between the last post talking about my excitement of going to my (4th) endocrinologist and this post.  As I'm sure you can tell, just by reading the subject it didn't go well.  I'm not very good at summing things up, I don't know if it's an anxiety thing or memory thing that makes me go into so much detail about stuff.  I'll try to, though a lot has happened since that appointment, both good and bad.  It has been hard to get the motivation, and energy, to write all of it.  Here it goes...

PART 1: The (4th) Endocrinologist

In her profile she stated, "I look forward to practicing and bringing the best and newest treatments to my patients," and this brought me some hope.  "Newest treatments," kept dancing around in my head and the fact that a friend had recommended her to me, it all gave me hope.  A few days before the appointment the office called and said she fell ill and wanted to push my appointment back another month.  This couldn't be happening!  I had already been waiting months for this appointment, I was running out of medication, I was a mess.  I set up the future appointment, while sobbing, and started looking for a naturopath because, by this time, I was done with endocrinologists.  Within an hour, they called me back and were able to get me in the beginning of the following week.  I put my additional search on hold.

I had expectations about how the appointment would go.  I would go over my history, concerns, symptoms, then go into treatment expectations. She would review the records I sent over with me and we would decide, together, how I can get better.  Oh, how wrong I was about everything.

When she came in she introduced herself.  Having a long and different last name she went over how it was pronounced.  From there she continued to talk.  And talk.  And talk...

It started with her telling me about all the time she had taken, before coming in to see me, to review the documents I had sent over.  I didn't get a chance to tell her how the majority of those "diagnosis" were years old, over with and never removed, incorrect, or also misdiagnosis.  She thought my other doctors are really trying to help me, yet once these other doctors realized I had thyroid issues they advised me an endocrinologist had to help me.  She tells me these other side effects of thyroid (or lack of thyroid) disorders need other doctors who specialize in those issues to help me.  I knew it was going to get worse from there and it did.

She continued on how she refuses to write scripts for Armour Thyroid.  That it is an unstable medication.  I was dying to ask her then why it's approved by the FDA and still on the market, & how Synthroid has had its own history of recalls due to its inconsistency.  I told her how the last time I was on Synthroid they kept increasing the dose and my pain increased with it.  How I was symptomatic of having a T3 conversion problem.  She goes on to tell me that TSH is the only number she, or any endocrinologist, needs to check.  Pain is a rheumatologist issue and I would need to see one.  (Oh God, this is getting worse by the minute.)  But she did make a point that, how could she tell if I had a T3 conversion problem being on a med with T3?  So she'll put me back on Synthroid, then check the T3 and my other thyroid levels later on.  Oh, she also said, "I'm not going to put you on a medication just to lose weight."  If she was listening to me she would have known I didn't want to be on it because of that!  After this I lost all trust in her treatment.

The remainder of the appointment she spends complaining about all the time she is spending with me and how it's going into her other appointments.  She, again, goes on and on about her name and how to pronounce it.  She goes over my blood work.  Oh hey, 0.42 TSH is in "normal" range!  Oh no, not this again!  No, I feel terrible at that level!  It's not normal for me!  Finally she goes into her plan for me.  She is taking me off 120mg of Armour and putting me on 100mcg of Synthroid.  I'll do this because I need some type of thyroid medication to live!  I have to have labs done on 2 different days and fasting before each one.  She's going over everything so quickly I ask her if she's writing it down for me because my short term memory has been off lately.  She tells me if that's the case, then I need to bring someone with me to help me next time.  Then again, goes over how to pronounce her name.  Wow, thanks.

I set up my next appointment and leave, then get in my car and start bawling.  I cry driving all the way home.  When I get home I start researching naturopathic doctors.

I already forgot how to pronounce her last name.

PART 2: The Naturopath

Not all naturopathic doctors dabble in autoimmune issues, so in my search I am looking for one who does and is close by.  The search is limited.  There's one in Rochester, but their initial appointment is pushing $400 (It may have even been $450, can't remember) and I just couldn't afford that.  Also, naturopathy is not "recognized" in NY state so they are not covered under insurance, nor are they allowed to write scripts for blood work or prescriptions.

I find one in Ithaca who says she can.  I send and e-mail of inquiry and in response I am told the initial appointment is around $250 (Better than $400  so that works for me!), but they are booking into September (and it's currently April or May, I can't even remember anymore)! So until I can get in, I am referred to a local ND whose initial appointment $150, additional appointments $75.  I like this, but since I have lost faith in endocrinologists, my primary is going to need to work with her as far as blood work and medication.  I have a good, long standing relationship with my primary doctor so this shouldn't be a problem.

The initial appointment with the local ND is great!  She is extremely thorough, going through my history, realizing and taking into consideration much of what is listed in my medical history is incorrect, misdiagnosed, and/or is irrelevant to my current situation.  She starts to confirm all my suspicions and research that I have done on T4/T3 treatment and why I am feeling ill.  Then, I knew it was coming and I dreaded it, she advises I need to change my diet.  No gluten, dairy, peanuts, red wines. Limit red meats, poultry, certain fruits, sugar, salt, and the majority of soy products, plus cut the carbs.  I need an anti-inflammatory diet.

She listens to me, explains things so I can understand them.  She goes over the blood work the last endocrinologist wrote for me & found out she wasn't even going to check my T3 at all! I'm adding a lot of vitamins and supplements to my diet.  I need to speak with my primary, get blood work done, put on an additional T3 medication, and go back on Armour Thyroid.  I'm so glad I did this!  The next day I call and cancel the future appointment I had set up with my 4th endocrinologist.  I'm OVER the terrible treatment I have had with them!

PART 3: TheAftermath

I have to gut out my fridge, freezer, and pantry of the foods I can't eat.  Wegmans has a good selection of gluten free food!  Unfortunately, most of the stuff that is gluten free has additional ingredients I need to be avoiding.  So I'd find something and, oh there's dairy in it.  Or, nope, that has soy, or that has peanuts.  I started crying in the middle of the supermarket.  It has gotten a little easier with time, but oh, what I would do for a Domino's chicken alfredo bread bowl every now and then!  Or pizza with fluffy crust!  Or, OMG, REAL ICE CREAM! *SOB*

The week after I saw my ND, on a Monday, I went into my primary's office.  I saw an NP who wrote scripts to for my thyroid blood work and I went to have my blood drawn.  I had already switched back to the Synthroid and my pain was getting worse each week that went by.  Then that Thursday I got a phone call from my NP.  She asks, "You're taking your medication every day?  At the same time?  You aren't eating or anything when you take it?"  Um, why am I getting drilled with questions?  What's going on?

My TSH was 17.11!  In addition to that, my Free T4 is low end of the reference range, my Total T3, Free T3 are low, and my Reverse T3 is at the high end of the reference range.  No wonder I was feeling like crap!  Everything is opposite of where it should be!

What concerned me the most was my TSH being 17.  I did a little research and found out that when my new endocrinologist changed me from my Armour Thyroid back to Synthroid she didn't do the conversion right and cut my dosing in HALF when it really only needed to be adjusted very minimally.  I had only been on Synthroid for a little over a month and can only imagine where I would have been if I would have kept course.

So, after being grilled with the questions by my NP she got me a script to get back on the Armour Thyroid, same dosing as before, & added on additional T3.  Within a few weeks I already started to feel better.  She wouldn't fill the dosing for the Cytomel (T3) at the amount the ND requested, but I saw my actual primary doctor a few weeks later, she collaborated with my ND, then raised the amount.

Some time has passed & now I'm subclinical hyperthyroid.  TSH low, T3 levels kind of in the middle of where they should be.  It still is going to take some more time to even out and labs to figure out the next step of action with me.  My overall health is doing well and I've lost a lot of weight.  It's amazing the roller coaster I've gone through all because of one stupid organ.  I'm only hoping my levels stay even and I don't get sick again.

And now that we're in September I'll be going to the new ND soon.  Eventually I'll write my experiences.  My goal?  To stop writing about my thyroid and autoimmune problems because I'll be feeling better.  Then I can start writing about more fun products and projects I am working on instead of depressing stuff about how terrible & misunderstood medical treatment is for thyroid autoimmune diseases!  I've been doing them, but more behind the scenes as of late.  You'll probably see more of them in my Instragram or Twitter as of now but hopefully I'll remember to post the stuff to my Facebook page now & then too.

Doctor shopping. Should you do it? (Why I left my last 3 Endocrinologists.)

I don't want anyone reading this to get discouraged about their health if they are suffering with autoimmune diseases.  I want you to take it as a learning lesson.  My life is not yours.  Don't think that having thyroid disease, Hashimoto's, Graves' disease, or whatever you have is going to bring you down the same paths I have been.  I've had many doctors tell me that thyroid disorders are some of the most difficult diseases to diagnose and treat.  You may have a fantastic doctor who is just trying to find the right treatment for you and these adjustments in your treatment, or medication, may take months to kick in.

What you NEED to do is look for warning signs that your doctor may not be right for you.  You're paying them to make you better so you deserve the best treatment you can get!  If you don't understand what they are doing or why they are doing it, ASK!  How do they respond to your questions?  Do they give you a clear explanation?  Do they take their time with you and not rush you out of their office?

Why I left my last 3 endocrinologists:

1) When my 1st endocrinologist told me my Graves' disease / hyperthyroidism had nothing to do with my anxiety.

• But I never had anxiety attacks until recently.
• Are you sure it doesn't?
• Even the Mayo Clinic says it goes hand in hand.
• Or what about the US National Library of Medicine National Institutes of Health studies?
• Even mental health docs say anxiety can be prevalent with Graves', so are you sure? 

Oh ok, you're the specialist and how dare I question your treatment even though my body feels all messed up still.  Why am I leaving your practice you ask?  I don't think I need to give an explanation.  He even had the NERVE to call my pharmacy to put in to NOT refill my thyroid medication after I told them I was leaving.  This caused problems when I got the new script from my 2nd endocrinologist.  Luckily that was quickly cleared up.

2) When my 2nd endocrinologist lied to me.

He was the one that pushed my thyroidectomy, and after that, when I was feeling symptomatic and had all these new issues,  I asked if he was testing other levels instead of just TSH.  "So you just tested my T4/T3 & Free T4/T3 and all my vitamin levels?" He said, "Yes." Got my labs and only TSH was done.

I might still have been with that endocrinologist today if he hadn't lied to me.  How hard is it to write on a script to have certain things tested for when I ask for it?  They aren't paying for it, my insurance is.  He could have at least humored me and ordered it and then just not look at the other results if he really didn't care.  But to lie to me?  It's unacceptable.

3) When my 3rd endocrinologist just wouldn't listen about how I was feeling.

My last health post was pretty much dedicated to the fine disaster that came from this doctor.  I would love to have said I TOLD YOU! to him but I'm not an asshole.  I could tell just by the look on his face at my last appointment that he knew he made a mistake.  His lesson will be losing me as a patient.

~

These doctors were not right for me.  It doesn't mean that that are not right for other people.  Some people do fine on synthetic T4 medications, some don't!  (Before I had my thyroidectomy, and before I had Graves' I did just fine on synthetic T4.)  Since I am going to live with this the rest of my life I need to understand it and I need to have doctors help me regulate it and understand it.  Again, everyone is different.  Reference ranges for blood tests don't mean you are necessarily going to feel fine within those ranges.

 ~

Now I know it's easier said than done to say, "Hey! Don't get discouraged!"  My panic attacks have gone full blown again.  I had, maybe, 1 day last week where I didn't have at least one.  That in addition to my depression is keeping me inside most of the time, unless someone drags me out of the house.  Due to this my doctors have pulled me from work for at least 2 months to give me time to see my new doctors and get tests done and, hopefully, get the right treatment.  I also now have a swollen lingual tonsil that is driving me insane and I went to my ENT about it maybe 3x and feel like going in again because it has been over a month and isn't getting any better.  If anything, it's getting worse and causing my speech to be more raspy.  All of this, and personal matters brought me down so low there was a few times I really scared myself.

Then a day before my appointment with my new endocrinologist I got a call saying she needed to reschedule.  Ok.  So, what's the earliest we can do that?  The woman tells me at the END OF JUNE!  No!  This can't be happening to me!  Instant panic and I'm crying on the phone with her.  I'm out of work.  I already cancelled my appointment with my old endocrinologist.  I set up the appointment but I'm wondering what can I do to get treated before.  Who's a good endocrinologist who I haven't gone to see yet, or naturopath / neuropathy that maybe can help me?  I left a message for my therapist advising what I was told and I felt lost and on the search again.  An hour later, they call back & tell me they can get me in on Monday!  What a relief!  Though everything worked out for the better and I could now relax, not much later the pain of another panic attack hit.

The not so fantastic life of autoimmune diseases.

One of the fun (sarcasm) things about having autoimmune diseases, as well as other diseases or sickness, is the fact that you can have these random and odd symptoms pop up out of no where.  If you don't document what's going on, they can be gone in a flash and then forgotten until it happens again, if it ever does happen again.  These uncommon, and sometimes odd, happenings could be a gateway to the right diagnosis and treatment.  You need to DOCUMENT EVERYTHING!

I may have mentioned before that a friend of mine had given me a journal a while back, happily titled, "I'm Going To Die."  I could really use a new one to start fresh going forward because if I do hand it to my doctor and say, "Read from this page going forward," they end up going backward looking at my chicken scratch of shit like my diet and weight loss from years prior, missing the point of the smaller, and most recent things that should be standing out.  And though it's almost always with me, it has been neglected far too much.  What I should be doing is consistently documenting it and then also placing color tabs in it showing weight, symptoms, or medication adjustments.

My brain has been absolute mush lately.  The other day I thought 2015 was 2 years ago, that we were already in May, that last week was this week and almost missed a doctor appointment if I hadn't checked my voice mail from the day prior.  Lately I've been questioning my total thyroidectomy, if it was really the right decision.  Knowing what I do now, I feel my endocrinologist at the time was adjusting my meds too quickly.  If it's so easy to regulate when you have no thyroid, and it supposedly only takes around 3 months to get the meds to even out your system, how come almost a year later, & on the same dosing, my TSH is STILL dropping making me hyperthyroid?   I should have switched endocrinologists months ago, when I told him I was feeling hyperthyroid and he started passing me off as diabetic.

'Alohi trying to comfort me.

I've become depressed again.  No one wants to be around someone who is sick all the time.  At least those who don't understand what I'm going through.  Plus you realize that people who have been with you since the start of it all still don't get it.  I also don't want to be around people who don't understand what I'm going through.  I don't want sympathy, nor empathy or suggestions to help fix me.  My idea of being strong right now is avoiding most human contact and stressful situations.  Usually by hermitting myself in my home and crying most of the day.  I've tried many times to write about my depression but have found it too difficult.

May is going to be full of changes and it can't come any sooner.  I have a new endocrinologist and rheumatologist lined up.  The last time I went to a rheumatologist was at the end of 2013, before I had gone back to work from my leave.  I was in so much pain on synthetic T4 medication and, at that time, no one was associating it with my medication or, lack of, thyroid.  I've mentioned it before, how the internal medicine doctor diagnosed me with fibromyalgia and was pushing... PUSHING... Lyrica on me.  My PA under my primary doctor had already addressed my increasing pain and recommended I see an rheumatologist.

You're probably thinking, "Well, if your other doctor told you to see a rheumatologist, how come you went to internal medicine?"  Unless it's blatantly obvious what's wrong with you, which probably 99% of the time it's not when you have thyroid (or most other) autoimmune conditions, it can sometimes (and usually does) take a month or more to set up initial appointments with new specialists.  So when your body is screaming with pain, you're going to start searching and reaching out to anyone for answers to MAKE IT STOP IMMEDIATELY!  Yet that can become a problem.  A problem of misdiagnosis and incorrect treatment.

What I did learn from that rheumatologist appointment was that I did not have RA, but I did have ANA which suggested lupus.  After a few appointments and notes that my pain was most likely due to my (lack of) thyroid, and with no further mention of lupus or ANA, AND with the pain starting to diminish with the start of NDT, I thought it was unnecessary for me to continue to go.

Fast forward to now.  

Those little hiccups in your health that you might ignore could mean something.  Googling symptoms can usually overload you with incorrect information, and WebMd Symptom Checker always points you to some sort of cancer.  Yet sometimes, just sometimes, things will stand out.  Something that has bothered me for YEARS and I just never really thought about it, was the sensitivity to sunlight that I have.

No I don't break out in hives or blisters, nor get sunburns if I'm out in the sun.  Then again, I'm rarely in the sun so I probably wouldn't know. What does happen is that I get nauseous, light headed, dizzy, and headaches that sometimes are borderline migraines.  It's been on and off for years, and when I lived in CA the constant sun was pure Hell for me!  I started noticing it again the last few weeks as it has been on and off sunny.  Even if it's cloudy, if it's bright out I want to rip my eyes out or my head off.  If the day would start off dark and gloomy I might feel fine, then the sun would come out and I'd feel like death, then it would go away again and the death feeling would go away.  Factor in other things like losing my hair again, skin rashes, burning joint pain that feels like it's in my right hip, I think something else is going on.

I reached out to a friend of mine who I knew has lupus.  Like thyroid disorders, lupus can sway in many directions as far as diagnosis, symptoms, and treatment.  There is also a lot of similarity in symptoms of lupus and thyroid diseases.  Considering I have ANA, no thyroid, and am still having all these issues, I figured it was time for some new doctors.

I just wish I was being treated right and felt better now.  I can only pray that will be soon.

April Birchbox (sorry)... and, as always, hoping things will get better.

I swear it's always one thing after another with me & I'm always wondering, "When will the madness end?" I started this post back in April and here we are in June.  I have yet to start my reviews of my May Birchbox also.

Work has been keeping me on my toes and I like my shift but I am still adjusting.  Having a weekday off is good because I have been making as many doctor appointments as I can on those days, which I have many of, and that keeps me from missing work if they are available then.  Yet I feel like I am still catching up with things like errands on the weekend day off.  It feels like no matter what task I do in my free time that I am losing out on all the other millions of things I need, or want, to do that I'm not getting done.  Just thinking about it exhausts me.

Besides work I just found out last week that I have Lumbar Radiculopathy and need to start physical therapy to keep it from getting worse.  My cat Milton, who had surgery for an unknown type of cyst on the left side of his neck that kept coming back and was attached to his jugular vein in August of 2011, now has one growing in the left side of his mouth under his tongue.  Because of where it is and how old he is I am taking him in for surgery tomorrow morning.  Then yesterday, my central air unit decided it didn't want to give me air conditioning anymore.  So on Monday morning, after taking my cat in for surgery, I have to then call and see if I can get someone out here to fix my unit ASAP!  Bad things come in threes right?  Please, please, PLEASE let me have good news and good things happen from this point forward.

Oh, my endocrinologist appointments also keep getting pushed back and back but I was able to obtain some information on my last blood tests.  TSH normal at 1.02, cortisol and other things were tested came back in normal range, but low end of normal ranges.  I'll be able to get more answers when I go in, in July, as I have been feeling more on the Graves' end of how I've felt in the past, though I'm not losing any weight (damn).  There seems to be no happy medium with my thyroid issues.

Next weekend my BFF and I will be hitting up the Allentown Art Festival.  Stocking up on Makepeace Naturals candles and various other soaps, spices, and who knows what else!  Can't wait and hopefully I'll feel up to posting about it soon after.  Until then here's APRIL's Birchbox review...

~

April 2014 Birchbox Overview:

• Spa Therapy Sea Wrack body wash by Gilchrist & Soames.
• Healthy Grain Bars in Maple Pumpkin Seeds with Sea Salt by KIND.
• OI shampoo and conditioner by Davines.
• Gala's Gems Collection nail polish in Gold Struck by Color Club.
• Color Contrast Eyeliner in black by Sumita.

Spa Therapy Sea Wrack body wash by Gilchrist & Soames.

• Retails $15 for 8oz. 
• About the product: Committed to cruelty free products containing no parabens, phthalates, propylene glycol, mineral oil, urea, DEA, TEA, or petrol-derived ingredients.  This body wash has a fresh scent of aqualeaf, sparkling citrus, and a barely noticeable hint of musk.  Infused with ingredients of Japanese sea wrack, honey, and brassica, this product is said to gently moisturize and leave your skin feeling smooth and refreshed.   
• What I thought: If you really look at the ingredients & compare, the top ingredients in this are almost identical to those body washes sold in drug stores & at Bath & Body Works. So the special ingredient that it's stated to be loaded with, it actually contains very minimal of the ingredient for it to make any difference.  The scent is lovely and it reminds me of a day at the beach, but it doesn't last long after the bath/shower. It lathers and cleanses average and I didn't notice it to be any more moisturizing than any other body washes I use.  Unfortunately, I wouldn't purchase this just for the scent at the price it's being sold for.  I'd get a stronger scent & the same cleansing from a drug store brand of body wash.
• I would buy it if it was cheaper. 

Healthy Grain Bars in Maple Pumpkin Seeds with Sea Salt by KIND. 

• Retails for $28.50 for 40, 1.2oz bars.
• About the product: The Maple Pumpkin Seeds with Sea Salt bar is just what it says, baked from a foundation of 5 super grains.  This snack bar will tide you over with real ingredients that are GMO and gluten free.  They believe that if you cannot pronounce an ingredient, it shouldn't go into your body.
• What I thought: LOVED the taste as it gave off a great sweet and salty flavor.  The maple wasn't overpowering, there was just enough salt, and a crunchy kick.  The only thing I wasn't digging about it was the packaging as it didn't seem like a bar and more like a sticky, flattened mix.  Though it's the same size as most granola or fiber bars, I felt like I wasn't getting enough and wanted more right away.  I compared them to the Market Pantry sweet & salty peanut granola bars I'm eating and the calorie content and fat isn't much different but the saturated fat was twice as much in the KIND bars.  The KIND bars are also twice the price as those but the fact they are gluten & GMO free, have much more natural and healthier ingredients, 5% extra saturated fat don't bother me as much (considering it's still under 10% of the daily value).  Plus it tastes SO much better!
• I would buy these.

OI shampoo and conditioner by Davines.

• Retails $26 for 9.46oz of shampoo; $32 for 8.45oz of conditioner.
  
• About the product: These products both contain Roucou oil which is rich in beta-carotene, antioxidents that are similar to vitamin E, helps reconstruct hair, stimulate growth, prevent aging, and reduce cell damage from UV rays.  The conditioner also contains apricot butter to soften hair, is said to help speed the drying process, and protect against damage from heat and tools. 
• What I thought: My hair is short, dry and damaged from styling and bleaching it, & also dry from my hypothyroidism.  After the 1st use of the shampoo & conditioner I was amazed!  My hair was super, super soft.  It builds up quickly though so after a few days of use it seemed ineffective.  It's a great product to use as maintenance for healthy, soft hair. 
• I would be open to buying these.

Gala's Gems Collection nail polish in Gold Struck by Color Club.

• Retails $13 for 4 polishes.  Exclusive to Birchbox.
• About the product: Color Club® teamed up with Gala Gonzalez to create this polish collection. These polishes are vegan and cruelty free, having never been tested on animals.  They advise to apply a base coat, 2 thin coats of their polish, then a top coat.  Currently, you can only purchase them as a collection through Birchbox.
• What I thought: Their polish is great & if your nail is prepped right it will last. I got Gold Struck and it had more of a pink hue to me with a gold shimmer, some may even call it a champagne color. It was very cute but you will need 2-3 coats of the product for it to look good.  Like the other polish I got from them, it lasted a good week before I noticed any chips or ware.  I wish I could zoom in on the other colors to see them better, or just buy them individually because this is the color I would want!
• I would be open to buying this.

Color Contrast Eyeliner in Jamun by Sumita. 

• Retails $15 for 0.06oz.
• About the product: Created to be bold, easy to blend, and last all day & night.  Made to make the whites of your eyes whiter and ideal for use on the water line of your eye.  It is a soft wax pencil that will not tug on your skin when applying, and glycerine guards against irritation.
• What I thought: The color I received was Jamun (Deep Purple), though it gives off more of a brown look to it. It applied very easily and was easy to blend and smudge but then stay as the look you created. It lasted all day and wasn't irritating.  The price is even competitive to other liners out there so it's worth getting one in a color you like to see for yourself!
• I would buy this.

While I pondered weak and weary...

So this morning I went to see my neurologist to have some testing done as the last couple of years, on and off I've had problems with pain, numbness and tingling in my legs and feet.  Things would happen randomly and I would just forget to mention it.  Like, I would be walking and I'd get a twinge of pain in my lower back and it would feel like my legs were going to give out.  Or I would be putting on my shoes and when I would bend over I would get tingling and pain in the bottoms of my feet.  This might happen for a few days, then it might not happen for months.  So, last week at my check up I finally reminded myself to tell her.

Today we did a Electromyogram (EMG).  Well, the 1st part of it anyway.  In each leg, and parts of my lower back, needles were inserted to various points in the muscle to record her findings.  The very 1st needle was in the lower part of my left leg and, if anything, was just uncomfortable.  So I thought the whole test was going to be a breeze, but as it went on it got more uncomfortable and much more painful.

There was one part of the test where it hit a nerve in my left leg and pain radiated up my back.  My back gave out and I felt like I was falling, like that pain I would get in my lower back where my legs wanted to give out.  I went into work and the nerve pain still radiated in me.  Took some Tylenol and that didn't help.  The pain went up into my neck, my head was pounding, I was starting to get nauseous, light headed, and sensitive to light.  I just got out of a bath and am feeling better but still not great.  My legs don't hurt as much, my head isn't pounding anymore, though I still feel like there's a lump in my left, lower back.  Maybe some ice cream will make me feel even better.  :)

Next week we will do the other portion of the testing where she will test the electrical pulses, not as invasive.  She also is trying to get an approval to have an MRI of my lower back and legs done.  As of now we know there is some type of damage.  I do not believe this has anything to do with my autoimmune disease but we are trying to rule it out and now I have many more new and unanswered questions.

I'm not even 40 yet.  Why am I having all these problems?

In other news, my mom's ATC was on the RubberStampMadness facebook page for Cinco de Mayo.  Isn't it cute?  I'm not much into rubber stamping or ATCs but I have done a few.

Eventually I'll get to my April Birchbox.  I feel like I need to lay down and rest my legs & back more.  Until then... ice cream!

Just want to feel normal again, whatever that is.

Good morning!  The only thing good about right now is I have a fat, purring cat on my lap.  He's temperamental though  & making it hard to type.  The last 2 days I woke up around 5am, drenched in sweat, cold & in pain.  I'm usually wide awake the rest of the day but feeling so tired & crappy.

Yesterday I took a short drive with Chris to get my car washed because, with it sitting around, it accumulated a lot of dirt.  That and I figured I'd top off the gas since I had a coupon for 5 cents off a gallon. (If you have a Delta Sonic near you USE THAT!  Today is the last day though.) With the wash ended up being, I think, 10 cents off a gallon.  My eye kept watering & I kept blinking it like crazy.  With the blurring going in & out, I got really uncomfortable so I had Chris drive home.  Never heard back from my eye specialist that I e-mailed 2 weeks ago & called on Monday & Friday last week.  Even if he is on vacation, someone still should have called me back to at least give me a time frame of when I would be able to get some answers to my questions.  Not sure if I want to try calling again today or wait until tomorrow.  I think the next best specialist is around 100 miles away.  This is frustrating & upsetting me.

At the car wash!

I actually thought going down to the 20mg a day of prednisone was going to start making me feel a little bit better.  Felt like my "moon face" & swelling maybe had been going down slightly.  This morning I look & feel as swollen as ever.  Back to looking like a Cabbage Patch Kid or Campbell's Kid.  I also can't really monitor my asthma because the prednisone is most likely helping my lungs.  I wish I were off this stuff. 

I love how it has taken me an hour to write 3 paragraphs because I had to correct a bunch of errors.  Chris is up now & the cats are on the move.  I already took my levothyroxine so I should be able to eat now.  I was close to pouring myself a glass of OJ in my morning haze but glad I didn't.  (NO food with the levothyroxine until an hour after.)  I know grapefruit juice is a big no no with this medication but I love the stuff & I think a few docs have said if I drink it later in the day or at night it's ok.  I'll have to do more research.

My neck, shoulders & fingers hurt so much right now.  Could be the weather too.  Supposed to have storms rolling through today.  I think it will be a good day for some reading, letter writing & crafts.  Maybe.

It's the most wonderful time...

For LUSH shopping.  By the end of the month I will have put in my annual order for Lush goodness which will include some gifties for my girls.  So, for the love of Lush my bath included tonight a Fizzbanger bath ballistic from Lush, Pink Clover soap from HawkMoon Soaps, and my Hair Biscuit from One Bath & Body.

I love Lush products, the company, the messages they give & what they do for the earth, people, just all around good causes.  Alas, I cannot afford a huge order from the NA site, USA or Canadian.  Upon years of ordering from them, one year I decided I wanted to place my order through their UK site, mostly considering they had more products listed & items not available on the NA site.  Not only was I getting awesome products but the exchange is SO much better!  Even with shipping!  I have noticed that the NA & UK sites are getting to be more similar but I have saved hundreds (YES HUNDREDS) of dollars by ordering from overseas.  The exchange can be around $1-3 for soaps, melts, ballistics & up to $7 for liquid lotions, shampoos, & shower gels!

Every year, just in case, I start 2 orders on each of the sites for the same products, or those similar if not available, then tally up the costs including shipping & then calculate the exchange.  Last year I saved around $200.  Mind you, I am placing orders around $400+ USD.

The only problem with ordering from the UK is the ballistics & rarely other things like the bubble bars.  Because they are so environmentally friendly, they do not use a lot of packing materials, & so I usually receive broken items.  Usually even the broken ones are salvageable though & I can use them, but I have received some pulverized before.  The company is very good at replacing items that come as a lost cause.  Last year, I received many broken ones but I could still use them so I didn't complain.  The year before they shipped my overseas order in popcorn & it was a huge mess between the popcorn & the broken ballistics in the package & I had to have many items replaced.  Always take pictures if there is a problem also!

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My cough is much better.  I do not like the way the word cough looks.  Or the way it sounds.  It's a strange word.  I should put it in my list of words I dislike.  This includes other words like moist, and discrepancy.  But anyway, I am feeling much better on that part, & thanks to my new pulmonologist.

I am probably one of the few people here that is getting anxious for it to finally start snowing!  We missed out on the big east coast storm, which is fine as I don't like dealing with messes.  I am still getting calls from people who are telling me their power just got restored.  I think the south towns may get some tonight, but they've already had some.  I am north of the city of Buffalo & haven't seen any yet, but there is a possibility we may have some tonight or tomorrow.  I need to keep my eyes open!  I cannot wait!  I always love the 1st snow, the blanket of white on the holidays, & then after New Years I want it to go away & can't wait for summer.

Beauty rest... all weekend.

But 1st, my daily bath as of tonight.

• Cold & Flu bath bomb & A Day at the Spa body wash from Wick-edly Sent.
• Lavender & Oatmeal handmade soap by my friend Kym.
• Hair Biscuit solid shampoo from One Bath & Body.

BTW - If you have a cold or the flu, C.O. Bigelow makes this stuff called Cold and Flu Soak Herbal Formula (simple, right?) & it is truly the most AMAZING bath I have ever had when not feeling well.  It really helps with the aches, congestion, & when you get out you want to curl up & go to sleep.  It is not going to cure you but I have NEVER found anything remotely close that calls itself a cold/flu soak that will leave you feeling like this does.  Bath & Body Works used to carry it with their line (that's how I discovered it) but stopped carrying it last year, no clue why, so you have to buy it directly from them, unless you can find a deal through another site somewhere.

So, yesterday, after missing like 2 & 1/2 days of work fighting off an awful cold & congestion I started feeling a lot better.  I went in to work & had an appointment set up for later w/my neurologist, still had a nagging cough.  They called me wanted me to come in early or cancel my appointment that I made specifically for later so I would not miss work, so I ended up missing work by going in early.  Everyone else I know has had a CT or MRI done before their 1st neuro appointment & they have never done one on me.  I am not too keen on the doctor they gave me & how I am being shifted around on medications so we decided to set one up.  He acted like I could get one that day so I waited around for approval... & waited, waited & waited.  Around 3:30 PM (I had been waiting since 1:00 PM) they finally told me they were going to set it up for a weekend in November.  So I got pretty pissed because I wasted away a whole unpaid day of work.

I figured I would do some overtime at work on Saturday to make up.  I when to the pharm, picked up some cough suppressant, headed home, got pissed off at a teen driving mommy & daddy's expensive lexus, got inside, took some of the cough suppressant, then don't remember much else except for taking a bath & then waking up at close to 4:00 AM & having an awful coughing fit & just feeling like my lungs were overwhelmed with congestion.

I pretty much only went into work today because I had obtained free passes to a preview of Puss In Boots & wanted to drop them off for some of the girls I work with because I know they have kids who would enjoy going to see a movie & they would enjoy not paying for it!  No clue how I got on this list.  Probably when I was out in Los Angeles I got on one.  They were more fun out there because you used to get to see them in pre-production & then get picked to be in focus groups to help shape the movie before they were even in post-production.

Anyway, so my supervisor comes in, mentions something about having pneumonia & I immediately start freaking out a bit.  History of upper respiratory problems & being on/off steroids I need know & avoid these things.  So I know I have to go to the doctor regardless, was going to go anyway, but it only confirmed my fear of how I felt this morning.  I set up an appointment, go in, no pneumonia (YAY) but I'm banished from talking & going out all weekend, & I should be drinking lots of black tea w/honey.

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So after my bath I...

• lathered on some Vicks VapoRub
• had some cough medicine with codeine in it
• & took a Sudafed for the congestion.

I'll probably be out like a light soon.  Since my other cold symptoms are gone though & I am under house arrest, this is a bad time for me to do online shopping!  I online shop a lot when I am stuck inside.  OMG!  I just remembered some things I want to write about tomorrow... please remember CANDLES.

There may have been a problem with posting comments.  There may still be.  I'm not sure. I think I fixed it.  Or you can always e-mail me.  Time to pass out in front of the TV before I pass out in front of this.

Skin unbelieveable...

Last December I had surgery to have my gallbladder removed.  If you have had below the neck, or above the waist surgeries you must get used to the fact of having strangers poke, prod, and see your nakedness and bobbies (if you are a woman, or a rather large man).  You will be felt up as a necessity for the surgery.  So, when I was having my arms & torso (that is such an odd word, isn't it?) examined the nurses kept exclaiming how soft my skin was & asking if I had a secret.

No secret.  I WISH I had one. To be honest my skin is no where near perfect.  I'm no supermodel, never will be & they're airbrushed anyway.  Being an artist & crafty I will always have those "artist hands."  I have my rough spots that I exfoliate & take care of, got my other spots that are just kind of WTF, & w/me fighting off big pharma & genes... well, that's life.  That's life for millions of girls & women out there.  And I see SO many beautiful females depressed about the way they look & stupid little imperfections when I think they look amazing, or even wish I looked like them!  Yes, because I get that way too!

Overall your skin is easy to maintain if you keep it clean, exfoliate, & moisturize. 

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I have been fighting a nasty cold the last few days now since I came back from Rochester.  Most of my time has been spent on the couch, coughing, feeling icky & drinking juice.

I came up with a nice combination of bath scents & products I really enjoyed the other day & received an awesome package from one of my BFFs in the mail today that contained some handmade soaps of her own!  I also swear, there is a never ending array of bath goodness I have yet to discover in this world!  So I really need to get on the ball of updating this.

Feeling good enough for this post so maybe I can do something more exciting in my next post.  Wish there were a few more followers.  Send me an e-mail or give a shout out & say HELLO if I don't know you may be out there.  Tell me something you might be interested in seeing on here.

Take care everyone!

MIA. What's new?

Let's see if I can make this post short & simple.  I seem to not be able to do that whenever I want to.  I like to elaborate, or go into details on things.

Where have I been?  What have I been up to?  October is a busy month with the 1st 1/2 full of birthday get together & celebrations.  Also I am still battling complications with my health.  So, I know I am not dying (yet) and it's nothing serious enough that they can pick up on any of their normal tests but it's bad enough to keep me out of work at times, from seeing friends & doing daily activities at times.  They can treat it, but we don't know the cause.  So, I am sick of being over medicated & am now going to see a pulmonologist at the end of the month because my doctors feel this is the next step.

2 of my major problems are asthma and migraines.  The mystery of the asthma is why is my allergist is always telling me that my breathing tests are coming back above normal, yet I feel like I still cannot breathe & I ended up in the hospital in August with symptoms that could have been either (a) a heart attack, (b) collapsed lung, (c) or a blood clot & it was none of those.  Something came up on the blood test that concerned them which made them do a CT scan but that came back clear also. So I was put on prednisone & lortabs then released.

Last weekend I started getting the same feeling in the left side of my chest that put me in the hospital in August.  Every now & then I can still feel it lingering & it has not progressed to the severity in which it had previously but I am being very careful about it.  I have upped my asthma steroid medication & keeping my activities at a slow pace.  Tried heating pad & epsom salt baths but because it's more internal those didn't work all that well.  This caused a doctor appointment on Monday, decision on the new specialist, fasting blood labs today which resulted in an awful migraine for most of the day.  Now I have a sore throat that's bugging me.  Unrelated.

Overall, I am doing better.  After work though I pretty much come home, sleep, wake up, get online & e-mail, try to work on mail or chores, have my bath, then fall asleep again until Chris comes home & we have dinner.  Then I fall asleep again.  So I have been very fatigued.  I am working on tapering off another medication so it may be a result of that.

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Another thing about me is that I work for GEICO in the customer service department.  I really love my job.  I love it when I can find people savings, when I make people happy, when I connect with people.  I have licenses in, I think, 8 states now. (I have a folder full of them!)  I mostly handle the New England states.  PLEASE do not ask me about car insurance on here!  This is not what this blog is for.  Call your local company.  I am sure they are great.  Or if you are insured with us call any of our agents & they will be happy to help.

So we do a lot of charitable things within the company for local & world wide organizations.  I recently donated to a local animal shelter through our company & now we are making up baskets for a raffle that will have the money donated to the United Way.  You can only imagine why I would be posting about it here!  Because it is going to be filled with bathing goodness!

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See?  I am already writing too much & I am very sleep, not feeling all too well, & must make a Betty trip to Rochester tomorrow to see Brown & Deenok for a meeting of the minds & to also celebrate the Libra's of our group.

So tonight's bath consisted of milk & honey bubble bath & Philosophy's Pink Cotton Confection, which reminds me exactly of Aquolina's Pink Sugar.  Philosophy is coming out with their winter items now.  I am getting excited looking at their site!

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Want to try Bath & Body Works new 2 oz. Be Enchanted lotion for FREE?  Print this coupon or show it on your phone in stores, or use code FBF114231 online.  Good only October 14-16, 2011.

To cure the headache.

I have been on & off suffering w/migraines & headaches for the last 6 days.  I have tried a lot of holistic ways to treat them, including bath products, essential oils, candles, vitamins.  Usually those do not work unless it is in a very mild stage where my body has decided it doesn't want to, eventually, blow it up into a full migraine.

So it had been hard to tell when & what will & will not work.  I have, unfortunately, gone the route of getting a neurologist & have been trying out different medications now.  So, the most recent bout of this pain in my (ass) head had to do with a quick stop to the amitriptyline I was on & starting at a low dose of topamax, which I will eventually work up to a higher dose. (The quick stop, instead of tapering off, was due to the major drug interaction between the 2.) And on top of that all I am on my period!

UGH!  I just sneezed & boy was that painful.

So, tonight I am trying some bath salts that are meant to help relieve headaches & I hope to review them tomorrow when I am feeling a bit better.  So no giving away how they worked & what they were... yet.

I also just realized Christmas is not far away & so I can't post some of my goodies I get on here because of them being gifts!  No spoiling the surprises!