X: X factor

 

So what is it about some of us that makes us susceptible to these lovely and mostly rare diseases?  Is it genetics?  Is it environment?  Is it the right combo of the above?

I know for me that the fibro comes from one side, my mother’s, and the autoimmune can come from both.  My mother’s cousin has autoimmune in her eyes.  But four members of my dad’s family have autoimmune.  Oh and the migraines plague both sides. I know genetics plays a role.

I had mono when I was 14, I do know that the Epstein-Barr virus stays forever and has been linked to chronic fatigue.

I grew up in Pittsburgh, the former steel capital of the world, and I have swam in its three rivers, which will probably never, ever be 100% safe for human swimming.  Did some of that seep into my skin and cause this?

What is it about me that makes me a lightening rod for all these things?  I have always wondered that.  Maybe with all of the genome mapping and leaps in medical science I will someday get an answer.  It is just a curiosity.

My biggest fear is that Sunshine will develop my issues.  I truly fear passing down these illnesses to her.  I am super vigilant for anything that even resembles what I have.

I think I had inklings of fibro as a child.  I had horrific growing pains.  My arms and legs would ache for hours.  Just awful, awful pain that would bring me to tears.  I remember this even going into my teenage years.  And the next day they would disappear.  I can remember the pain to this day.

Also as a teenager, I can remember having “knots” in my back.  Really awful tender spots that radiated pain.  I just thought it was stress.  My boyfriend at the time was pretty adept at massaging those tender spots out.  I just thought it was par for the course.

So I am aware.

I wish that along with the specialness of these diseases, we could get superpowers too….

 

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Migraine city

Weather-Worst-Migraine-Trigger-300x199

 

Can you guess which is the worst for me right now?

I have had migraines since puberty, probably before.  I have taken almost every med under the sun.  Treximet works, usually within 30 minutes, to quell the war within my brain.  But Treximet is expensive.  My cost, even with insurance, is $64 for 9 pills.  I am currently having 4+ migraines a week, so that doesn’t exactly work out in my favor.

I’ve been supplementing with Excedrine migraine, but I’m EXTREMELY drug sensitive, and that small amount of caffeine (as low as the amount in a cup of coffee!) is enough to keep me up at night.  Which is why I don’t drink coffee.  That and the smell.

I have started back on Topamax, and as the nurse that I am, independently increased my dosage.  No horrible side effects yet.  I just want the pain in my head to end.

The nausea is enough to keep me from eating actual foods, which is slightly beneficial because it keeps me from seeing certain people at meal times.  Yes, that situation has not gotten any better, despite my best efforts to duck and cover.  I truly feel that my relationship with my mother is beyond repair.  Don’t think I can ever forget the evil she has spewed at me over the last few months.  It still hurts, but my shell is growing back.  Tougher and thicker than ever.

The one truly awful side effect of this migraine nonsense is that I haven’t been able to fully enjoy Valentine’s Day.  My husband bought me chocolates, and I can’t eat them.  Major, major trigger.  Boo.

Good news?  I should be hearing back from a prospective employer sometime soon.  I’m hearing from a friend that works there that it is a pretty good bet that I’ll be hired.  The sooner I start, the sooner I can move out.

Maybe that will take care of my number one trigger:  stress.

Does it ever end?

Just got over the concussion, now I have a new crisis.

My initiation into chronic illness came 8 years ago.  I worked in the ICU as a registered nurse.  I’m not sure exactly how it happened, I was on antibiotics that have now been proven to cause these types of issues, but I contracted c.diff.

For those of you who don’t know (lucky you!) c.diff is a spore forming bacterium that is absolutely devastating to the GI tract.  Most people who contract it are ill, older or younger.  Around the time I got sick, they were finding that more and more “healthy” people were contracting it from seemingly innocuous means, i.e. after surgery or while taking routine antibiotics.  I was relatively healthy (no fibro yet) and 23.

They theorize that my strain was the more “virulent” type recently found in Canada and that was spreading its way across the U.S.

Symptoms are usually massive diarrhea, for me, over 24 times per day, along with horrific stomach pain.  They really don’t have effective treatments for it other than more antibiotics.  Some which are toxic.  They are still experimenting with a “stool transplant” (pleasant, I know) to infuse the infected gut with “healthy” bacteria.

I became violently ill and required hospitalization.  Twice.  I was losing massive amounts of fluid from the constant diarrhea, and the pain (the churning) in my gut was unbearable.  I came thisclose to requiring a colectomy and pooping into a bag for the rest of my life.

About four months into the c.diff infection, I was diagnosed with fibro.  The theory there being that the overwhelming infection triggered the fibro.

It was 9 months and down 40lbs (which I couldn’t afford to lose at the time) later when I was finally deemed infection free.

The day I received this news was the day I found out I was pregnant with Sunshine.

Unfortunately her biological father wasn’t as happy as I was at the news.  We were married for less than a year when I got sick.  And the toll of the medical costs, the loss of my income (since I couldn’t work) and the stress of my illness more than likely contributed to the demise of our marriage.

Given the overwhelming immune response that occurred, they (the docs) think my autoimmune issues might have been triggered at this time as well.  Which leads me to present day.

I haven’t relapsed since 2006, but I have had GI issues since that time.  I have been extremely cautious about any antibiotic use.  I also found that I have to be VERY VERY careful with NSAIDS (think ibuprofen, naproxen, etc).

After concussion #4 I was prescribed some heavy duty NSAIDS.  I developed bleeding in my stomach after that.  It was treated easily with Nexium, but from then on I have had to stay away from any type of pain reliever other than Tylenol or Tramadol.  Fun for someone with a chronic pain condition.

The long term steroids further damaged my GI tract. And with this last concussion, and the subsequent migraines it spawned, and the fact that I twisted my knee exercising, I dipped back into the ibuprofen.  My migraine meds have naproxen in them.  And now I’m completely screwed.

I’m having bleeding again, horrific gastric reflux, and severe pain right under my sternum.  I wake up with a sore throat every morning.  I’m changing my diet as to not increase the pain, but it really isn’t helping.  I’m eating Zantac twice a day.

The pain is about 6-7 in my stomach for most of the day. And its getting worse.

I have an appointment with a GI doc in January.  I’m hoping that my PCP can call in something like Nexium to quell this volcano in my stomach.

And did I mention that I’ll be on the East Coast for the week between Christmas and New Years?

I’m stressed, the family issue is tense, and Christmas is a week away.

I’m just hoping that I get some relief soon.

SPRING BREAK!!!

Ah, yes.  A wonderful time of year.  Here in Texas (at least in the area I live in) all the school districts have a similar calendar.  Including the colleges.  So both Sunshine and my husband are off this coming week.  My mom teaches as well, so she is off.  And its my birthday this week.  Oh and SXSW is going on.

I would have loved for something like this to occur when I was growing up.  “Spring Break” referred to the two days I got off from school right before Easter.  But if it was a bad winter, most of those days were “make up” days so that the school district could get 180 days of school in before June 30th (as per law).

Sunshine had an entire week off for Thanksgiving, nearly two and a half weeks off for Christmas, and now spring break.

She is already enjoying it.  She has been outside most of the day today.  And she came back from my parents house with shoes that were still oozing mud.

I just hope my health can improve so that I can do things with her this week.

I’m still couch bound.  But that’s an improvement from bed-bound, which is how I spent my morning.  With my legs elevated.  My blood pressure bottomed out.

I understand that medications (especially in my body) are pretty potent.  I just don’t like the blood pressure yo-yo.  I feel awful.

I have been through childbirth (assisted with an epidural).  I have fibromyalgia.  I have a 17 year history of migraines.  But nothing was like that wicked headache I had last week as a result of my blood pressure.  That was such intense pain.  Not in my usual migraine areas.  I swear I still feel the effects of it.

Its like a never ending loop.  I feel awful so I can barely navigate through my apartment, let alone exercise.  I gain weight as a result of the meds.  I also have lovely side effects like tachycardia and hypertension.  But in order to (naturally) deal with those issues, I have to exercise.  And lose weight.  Grrr!!

Ok.  Positive thinking.  Sunshine.  Just watching her interact with her friends, with my husband…its such a treat.  She is quite a mighty little human, and she will definitely be a force to be reckoned with as she grows.

The things that come out of her mouth are priceless.  Just seeing the way she thinks, how she goes about solving problems or analyzing a situation is incredible.

She blows me away almost every day with her intellect, her sense of humor and her zest for life.  I am truly blessed to be her Mama.

My goal this spring break is to relax and have fun with my family.  I’m sad that I will probably have to skip SXSW because of my health.  But maybe I’ll get a boost of health later in the week and I’ll be able to at least wander downtown and find some great music to listen to.

And I’m grateful there is no snow on the ground 🙂

You know its progress when you can finally sit upright..

Image

© Silverlily | Dreamstime Stock Photos & Stock Free Images

Thank you for the well wishes.  This truly sucks.

But, in trying to remain positive, I will dwell on the fact that I can now sit upright for periods at a time without getting too dizzy and nauseous.

That, my friends, is progress.

The bp meds are completely draining me.  As if I’m not drained enough.  But today was less draining than yesterday.  If that makes sense at all.

I did spend most of the day sleeping, and i haven’t done that in awhile (two weeks? ha!)

I am still trying to hold up my share of the housework, and actually did the dishes last night without too much difficulty (if I lean against the counter, I can steady myself).

I have had a few near misses while furniture surfing.  But those incidents are diminishing.

And I stopped taking my blood pressure every five minutes.  Being a nurse can really cause some OCD when it comes to stuff like this.

And the headache from hell which first alerted me to this issue is slowly fading away.  I am still confused as to which is the best pain medication for this situation, because it does feel similar to a migraine, but not entirely migraine-ish.  And I can’t take both the tramadol and the Treximet at the same time (something to do with serotonin), so I end up just randomly picking and seeing if it works.  So far the Treximet is winning.

I try not to think of the internal damage caused by this lovely drug cocktail.  Again, the nursing thing.  I have said it numerous times on this blog.  Sometimes having an education in the health field is dangerous.

It is bad enough reading all the fantastic side effects associated with these medications, it is another to see them in living color throughout your career.

And sometimes my mind will enter the never ending loop of medicines.  Example:  ok, if I am taking the steroids for this long, my bones might be weaker, should I take a calcium supplement?  But with some of these autoimmune diseases, there is a risk of kidney stones, so I shouldn’t take the calcium.  The steroids can also cause diabetes, should I be taking my blood sugar?”

It truly can go on like this forever, given my rather large list of medications I now need to take.

Then there is the other way of thinking.  My husband’s friend works at a health store.  I have been in to see his boss several times over the past year as I was just feeling worse and worse but had nothing to actually “test” for yet.  She is a naturopath, and thinks I should be treating this completely through supplements and diet.

I can understand that approach.  Herbs and natural products were there centuries (more than a millennia?) before modern day pharmaceuticals.  But I’m actually scared to come off the medications that are keeping the inflammation to a lower level.

That’s enough for tonight.  Hoping I feel better tomorrow.

Under pressure

© Krzysiek_z_poczty | Dreamstime Stock Photos & Stock Free Images

© Krzysiek_z_poczty | Dreamstime Stock Photos & Stock Free Images

I just can’t win. Yesterday (and most of the day before) were absolutely awful.

I was hit with one of the most intense headaches I have ever experienced. And this is very meaningful because I have had migraines for the past 17 years and have been to the ER plenty of times to deal with the pain.

This one was different. My migraines are usually left-sided. Its usually an intermittent to constant pain that I can identify pretty quickly and take the appropriate medication (Treximet). They haven’t been getting to the “point of no return” lately because I have a good supply of the meds right now and don’t feel I need to ration them.

Well, Tuesday, I was hit with a severe headache that I really couldn’t identify. The pain was across my forehead, down the middle of my skull (I call it a skunk headache) and then across the back of my head and neck. The pain came on quickly and was absolutely intense. I’m talking 9/10 on the pain scale. I was literally lying in bed, pulling my hair because that sort of distracted from the intense pain I was experiencing.

I did check my vitals (like any good nurse) and my bp was 150/100.

The pain was intense. I mean, teeth grinding, grab on to the closest thing and scream pain. I didn’t go to the ER because I have no health insurance and I’m already in over my head as far as medical bills go. I took the Treximet which helped, but not as quickly and not as completely.

I finally fell asleep (with a pillow over my head, vicks vapo rub coating my face and biofreeze coating my shoulders) around 8:30 p.m. I woke up at midnight, absolutely exhausted. But still in pain (it was about a 3 at that point). I again took my Treximet and went back to sleep.

I got up with Sunshine at 6 and still had the pain. My blood pressure was still high (112/98) so I did the entire routine over again. This time I could barely move. I mean, I was so dizzy that I had to “furniture surf” so I didn’t fall. I had nausea, I couldn’t think straight. But Sunshine got on that bus. She was clean, fed and happy.

I woke up to my mom taking my pulse. I had sent her a text earlier in the morning telling her what was going on. She tried to get in touch with me (I had my phone on silent) and when she didn’t get a response she just came over.

I am so happy that she did. My blood pressure at this point was 112/100 and the pain wasn’t as severe, but still present. My mom made me call my primary care doc and she drove me to and from the appointment (and she paid for it).

My husband was basically clueless. He also has high blood pressure (usually 140/90) but he has never had any symptoms. He was at a loss for what to do for me. He had good intentions, but just didn’t know what to do.

So I went to see my PCP. The doc thinks the headache is from the blood pressure, or that my migraines are getting more intense because of the blood pressure. I already knew that I was drug sensitive. I had no clue I was blood pressure sensitive as well.

For perspective, a blood pressure like 112/100 is concerning. But some people are able to function with consistently high blood pressure without any sort of symptoms. I have seen people with bp as high as 200/120 and not feel it. That is why it is called “the silent killer”.

I have never had any problems with my blood pressure before. It actually runs low. Normal for me would be 98/70.

The doc is also very concerned about the associated symptoms (headache and dizziness). She actually wants me to use a walker.

So, she started me on a blood pressure medication. Fantastic. I am to call if the pain gets worse, if my bp doesn’t drop or if I have any more problems.

I am calling her this morning because the pain is still present. Maybe 3-4/10. But I’m concerned with taking more Treximet, as it is a vasoconstrictor and can increase blood pressure. I’m hoping she can help with something else for the pain.

I am heading back to bed now. Doc thinks it may take a few days to settle down.

I still don’t know why this happened. It could be the steroids. Or the weight gain. Or stress. Or something completely different.

Grrr!! Can’t something go right for once??

WARNING!!

True!!

My replies:

1)   Thank you!  But I now look like a hippo.  I looked much better with color to my cheeks, no bags under my eyes, and no mysterious bruises or rashes.  (Or I should just hand them a pic of me at my wedding and say “this is what I REALLY look like”…oh and I got married 8 months ago).

2)  Does everyone have to do a countdown prior to heaving themselves out of bed every morning?  I think not.

3)  Yes.  And there are starving children in Africa.  Your point is?

4)  I wish.  Why don’t you snap out of being an a-hole.

5)  Maintaining my sight and staying out of the hospital  is a full-time job.  And since I no longer have health insurance, me staying out of the hospital is saving YOU money.

6)  No you don’t.  There isn’t anything to watch on TV (pretty much anytime of day), there are only so many websites you can visit, and there are only so many positions your body can tolerate for a given period of time.  Eating in  bed also has its drawbacks.

7)  I wish.  If I go out in public, I risk getting sick.  If I sit in the sun for longer than 5 minutes, I risk some serious sunburn.  If I do the wrong type of exercise, I run the risk of breaking a bone or snapping a tendon.  If I walk further than I anticipated, I risk not making it back.  Again, keeping me OUT of the hospital is saving YOU money.

8)  That’s great.  And do they walk on water?

9)  Right.  If you had pain like this, you would be in the ER.

10)  I’m a nurse.  Your point is invalid.

Thank you Big Pharma!!

Yes, it really does work.

When I lost my insurance coverage at the end of November, I tapered myself off some of the medications that are outrageously expensive. The big ones being Lyrica and Treximet. I thought, perhaps, I might do better off the medication. And that was a bad idea.

Drug viles containing money

© Donnarae | Stock Free Images & Dreamstime Stock Photos

Apparently, I need these medications.

In the past, I have done a “drug holiday” from some substances, namely when my former husband removed me from his health insurance a few months before the agreed termination date. That was a nice wake up call.

So I was familiar with how much money these medication actually cost. At that time, I was able to get some medication assistance from a local charity.

This time, I looked into the prescription assistance programs advertised online. In particular, I went to PPARX.

I just typed in the medications that I am having difficulty obtaining (Lyrica, Topamax, Treximet) and some basic information and their search engine found several programs I could apply to. Filling out the forms online also helped me with hand cramps.

After making copies of my financial information and obtaining a new prescription (and some other paperwork for the Lyrica) I mailed the forms. Less than two weeks later, I started getting mail.

For the Treximet, Glaxo-(whatever they are calling themselves these days) sent three months worth of the medication. And considering that my migraines have increased significantly in the past few months, this delivery was very welcomed.

For Lyrica, Pfizer sent a three month supply. Directly to my door.

And the Topamax? Well, that’s the only one I haven’t been able to secure.

These programs do work. I will start back on the Lyrica tonight and maybe I can start feeling better in a few weeks.

I’m no longer worried about my next migraine. Although I monitor every headache and try to trace it back to a trigger, I no longer have to play the “ration” game. I no longer have to attempt guessing at what the head pain means. And since I get different types of headaches that can bloom into a day spent in bed, this is a wonderful development.

Migraines, for me at least, are mainly left sided…encompassing the entire left hemisphere of my head. The pain can be throbbing (including my eye, ear, skull and neck into the shoulder) or it can be one localized spear of pain, usually at the junction of the skull and neck.

Right-sided migraines are a doozy. When I start feeling that kind of “hum” on that side, I run to grab the meds. Right sided migraines have sent me to the ER on several occasions.

I used to have visual auras prior to the migraine onset. I used to see zigzags, confetti, fireworks. But since my eyes exploded last summer, I can no longer differentiate between the pars planitis and the migraine disturbances.

I am very happy that these programs exist. And that they work.

So far, so good..

A week into the new year and I’m doing ok.

Methotrexate hit much harder than usual this past weekend.  Much more nausea and the sensation that my limbs are full of lead.  Basically spent the weekend in bed, which is what usually happens.

Today I drank more water and actually took a 10 minute walk.  I sat outside for awhile and watched Sunshine play with her friends.  She is growing up so fast.  Halfway through kindergarten.

Migraines– I voluntarily stopped some of my meds due to cost.  One of them was to help with my migraines (topamax).  I have been on that medication and Lyrica since 2007.  About two weeks now without them and I think I need to go back on the topamax.  I have had a migraine 4 out of the last 7 days.  But when I refilled the prescription, I found out the hard way that it wasn’t on the list of “approved generics” at the local store.  So instead of paying $5, like I thought I would, it came out to $220.  And now I don’t have it.  I know not to even try Lyrica.  Last time I tried paying cash it was something like $8 per pill.

So I am now going to start looking at those pharmaceutical prescription help sites.  Its clear that I do have a need to be on some of these meds.

I am also getting help from a family friend to organize my medical records.  She is a legal nurse and has volunteered to help me with disability, finding free meds, etc.  It is pretty clear right now that I cannot return to my former employment.  I’m looking at other ways to make myself marketable, but one of the big issues with me is the fog that the meds cause.  And its unpredictable.  Nurses need to be on task, be able to make judgement calls.  And sometimes I can’t.  Sometimes I’m functioning just fine, but if I get to overwhelmed or too tired, I just can’t think.  Even looking at job descriptions the other day completely threw me through a loop.  I just couldn’t concentrate.

So getting help in this maze of health issues is so wonderful.  And even though I am a nurse and the product of two nurses, I still don’t know what I’m doing in terms of applying for benefits and presenting a medical case to the government.

I have also found a website that is completely dedicated to the actual problem I have.  I still don’t have a definitive diagnosis of sarcoid.  But at the last eye appointment, the doc mentioned the words “pars planitis” in addition to the usual terms of “uveitis”.  So I plugged them into the old search engine and I find a website specifically for pars planitis (www.parsplanitis.org).

Its rare.  I found it through the “rare diseases” database.  So rare the the group on Facebook for this condition only has 38 members.

Finding the website made me feel so much better.  I even wrote to the expert doc on the site and he wrote back.  Although the information wasn’t hopeful at all, it was a step in the right direction.  That doc says that I should do anything I can to get health insurance and that my case sounds very aggressive and that I am running the risk of permanent vision loss.  Fantastic.

But it did help to read the tons of information.  It helped to understand the condition better.  I have been addressing this in the wrong manner.  I have been looking for systemic reasons for why this is happening.  Per the info I have, it  can be idiopathic.  So I am switching my thinking around to focus on just my eyes.

It was also helpful to read that my docs aren’t completely off their rocker in prescribing treatment.  What I am doing is inline with what this website says is the proper treatment.  Again, as  nurse, I don’t 100% believe in everything the docs say.  Even with my eye doc, who is fantastic, I still have the tendency to be less trusting because of my 10 years of working with doctors.

So this year is going ok so far.  I still take it one day at a time, one night at a time.  That’s all I can do.

Euphoria

I don’t get to write many of these posts.

At this moment in time, I am pretty euphoric.

Had a fantastic day at the zoo with Sunshine, my husband and my mom.  It was a little chilly, but health wise I held up.  My plan of frequent breaks and rest stops seems to be working out.  Because of the weather, there was practically no one there.  I tend to get overwhelmed with crowds and lots of noise these days,  but we were able to stroll leisurely through the zoo with minimal difficulty.

On the way down (its about an hour and a half away), I did manage to give myself a migraine when I was trying to focus on the tiny screen of my camera to delete pictures to make room on my SD card.  But I took my medicine and the migraine (complete with nausea), subsided by the time we got there.  Score!

We had an early dinner that I actually had the appetite for (gotta love ihop) and on the way home all of the adults shared a “spirited political discussion” on the state of healthcare in America.  No one got upset, no one called names, voices weren’t raised.  Although I will continue to disagree with my mother’s position on access to healthcare, we were civil.

The main issue is that she feels the government has no business in healthcare.  I understand her point, but then consider my own situation:  I currently have no insurance, I have a chronic illness that could result in permanent blindness, and I have no access to a potential cure because I cannot afford it.  The medication I am currently taking to keep the inflammation in my eyes from progressing is not eliminating it completely.  It has been recommended for me to start on other medication to halt this disease, but I cannot afford it.  So I am running the risk of permanent eye damage because I cannot afford the optimal medication for my condition.  Because I can’t work to afford my health insurance.  I can’t work because of said health condition.  See the dilemma?

So we basically agree to disagree.

When I got home, my final Christmas gift was in my  mailbox.  The CD containing all of my professional wedding pictures from my wedding in June.

Just looking back on that day is enough to produce euphoria.  You can see the love we have for one another pouring off the screen.  I nearly cried.  We have been through so much in our young marriage, and just seeing that one perfect day (before I ballooned by 40lbs, thank you steroids) is such a strong reminder of our love and devotion.

Awesome day.  I shall savor it.