Starting an immunosuppressant

This week I took my first dose of humira, a medication that will suppress my immune system in the hopes to lessen inflammation.  It’s been a long time coming and isn’t a decision a patient or doctor take lightly.  A lot of people are nervous to start this kind of medication, but a lot of people do really well on it.  The more info out there about it, the more confident someone can feel about choosing their therapy so I felt the need to put my experience out there.  (Although the drug company is amazing and provides you everything you need including a very competent nurse that can answer any questions you have.)

First off, why am I even taking this?  I’ve spent the last 3 years (ish) trying to sort out gut problems.  Ended up that I have crohns that is mainly in the higher part of my intestines, which is (according to my doctor) responds better to treatment.  After some time on Pentasa, things have really settled down.  Totally awesome, however in December I started having swelling in my knees and they’d get red and super hot.  We ruled out other causes with the rheumatologist and decided that it was most likely caused by my crohns.  We tried some other meds, one which led me to discover that I have a sulfa allergy and the other being one I can’t stay on for long periods of time.  Ultimately it was decided that humira was my best bet at getting back to normal.

Now you may be asking yourself why still, it doesn’t sound that bad.  I get it.  Other than the stupid amount of other issues I have going on, inflammation is bad.  Long periods of inflammation are not good for you.  It can cause damage and increase your risk of cancer.  (Although, I guess everything causes cancer so…)  The one thing I can always guarantee you is that my inflammatory markers are going to be high no matter what.

The process for getting the medication was confusing, but there was people that helped.  Humira is a special medication, my insurance required a prior authorization from my doctor, and it’s shipped directly to you from a specialty pharmacy.  The guy that I talked to at my insurance..  well, I’m pretty sure he didn’t really know anything that I was asking.  With the guidance of my humira nurse, we got it worked out and I had my medication by the end of the week.  A big plus is that humira gives you a card to help you pay for your copay, even if you have private insurance.  My starter box with 6 pens only cost me $5.  I thought I was going to have to pay $150 a month for my regular dose, so I’m a happy camper.

First injection was four shots.  That’s a bit intimidating, especially for people that aren’t okay with needles.  Thankfully, needles are the one thing I’m super comfortable with.  That sounds bad…  I’ve drawn blood, accessed IVs, and used syringes working in the hospital for over  5 years so it’s no big deal to me.  If the sight of a needle just freaks you out, you’re in luck!  You won’t even see the super small needle because it’s covered by a sheath the whole time.  Of course it’s going to burn, but shots tend to do that.  Give it a minute and you’ll be alright.  Some people even try to numb the area with an icecube prior to giving themselves the shot, so that might help with it.  The worst part about it, to me, is the gurgle noise it makes as it’s pushing the medicine in.  Super cringe-tastic, but I’ll take it if that’s the worst thing about it.

Hooray for me, no reactions at all!  Just bled a bunch on one of the four sites, which is no biggie, it happens.  It can take a while to notice any changes, so I’ll patiently wait.  I will say that I felt the most awake I’ve been in forever on day 3 and even made dinner without my knees flaring up.  Of course today (day 4) Aunt Flo decided to kick my ass, so we’ll have to wait and see if there’s a trend.

I’m excited to maybe get back to feeling a bit normal again, but I’m not going to hold my breath.  I’m just glad it’s going to be super easy to make a part of my routine.  I will have to hound myself at work to make sure I’m using all my PPE because we get a little relaxed about it back in the microbiology department.  Being that I work with things that make people sick all day, I was most nervous about work and getting sick and blah blah blah.  My humira nurse told me that she had many patients that work in the hospital, some in the lab, and they hadn’t had any more trouble than anyone else.  So that helped put my mind to ease.

Of course this medication isn’t for everyone and you have to take into consideration a lot of different factors.  If you are doing research and trying to making a decision, I hoped this helped some.  If you have any questions, reach out.

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Aware.

Getting dumped into the fibromyalgia category is a quite a journey.  For me, it started when I was 12 and we didn’t get to a conclusion until I was 17.  Every person has a different path, but it seems that two things are a constant: 1. It takes years to figure out why you’re in pain all the time, and 2. There isn’t enough information or the information isn’t taken the way it’s intended.  It blows my mind really.

I was diagnosed by a pediatric rheumatologist that reminded me of Count Olaf from Lemony Snicket’s A Series of Unfortunate Events.  The hair and body type was dead on and he was, at least in my head, a mean doctor.  I’m sure the examination of trigger points didn’t help my view of him, however it was the comments made when it came to exercise that really made me not a fan.  I would do what he wanted, nothing changed.  When this all started I was within my appropriate weight for years anyways, so I didn’t see the point.  He said that he should come to my house and whip me with an extension cord…  in front of my mother.  What kind of shit is that?

Needless to say, I didn’t go back to him.  Now I don’t know if it was because I’m not as educated or if it was because he was not as educated, but we didn’t have a real understanding as to what was going on, what was ruled out, or anything inbetween.  My pain wasn’t interfering too much in my life for it to be a huge issue so I continued on my meds and went about my merry way in life.  I didn’t mention it a lot to people because most people thought it was a made up condition at the time anyways.

Today I am a medical professional and make sure that my doctors explain everything to me and take a vocal role in how my treatment is handled…  Even if I feel like a fish flopping around on the ground in this situation…  It’s always complicated with me.  I have symptoms, nothing really shows up on tests, there isn’t really any damage as far as they can see, so there’s nothing to do.  It’s frustrating to me and it’s frustrating to the doctors.  The most important thing to have in my situation is well educated doctors that are keeping up with new research.  This means university doctors for me.

I was hesitant to see new rheumatologist.  I’d been handling myself with just my PCP, a gynecologist and a GI doc quite well.  The feelings I had from the old rheumatologist came back and I just felt like I’d be berated for being overweight and that would be it.  To my surprise it was nothing like that.  She was critical in the way she examined me and went over my history, as one should.  She didn’t think my new issue was a new condition, but she was going to do the workup anyways.  When she asked if I had any questions, I hesitated and eventually just told her that I hate my fibromyalgia diagnosis.  I told her that I never really trusted that it was my answer and I never felt any better.

Her response to that comment made an impact on me.  She explained to me that they believe it’s your nerves confusing signals as pain and how exercise trains those nerves to stop interpreting that stimuli as pain.  This made sense to me, especially after seeing the work done at my previous research job.  I felt better about it.  She even gave me a pamphlet for a place that works with a lot of her fibromyalgia patients for pain management.

So a few weeks ago I went to find groups on facebook that I could join and talk to others with fibromyalgia.  I mean, let’s face it, dealing with this stuff makes for a lonely existence.  I found a couple groups and after a day of my newsfeed being completely full of my new fibro friends, I couldn’t take it.  The posts were full of pseudoscience, issues that have nothing to do with fibro, questions that should be strictly for a doctor and everything inbetween.  My impression: most of these people have an actual diagnosis that their doctor didn’t find and most of these people have doctors that aren’t educated enough to educate their patients.

I had to get out of there.  I felt terrible.

Keeping on top of your health is extraordinarily difficult when you’re dealing with vague symptoms, overlapping diseases, uneducated doctors, stubborn doctors, you yourself don’t have a background in healthcare and if you’re dealing with cognitive issues thanks to your condition like many of us do.  There is a serious lack of awareness with this condition that we’re learning more and more about all the time.  It makes it even more difficult when doctors are giving up on diagnosing their patients and throw them in our category.

This being said…

May 12th is Fibromyalgia Awareness day.  Please take a minute to do some research, visit http://www.fmcpaware.org/ , talk to someone who has fibromyalgia and learn about their experience.

 

The f*ck was I gonna name this…

Changing jobs has been difficult the last two years.  Mentally, I’m not the best anymore.  I struggle finding words, I get things backwards, I have a hard time with numbers and letters.  I was thinking about how my training has gone with my current job and one thing stood out…  one person just kept saying “You need to think more carefully, slow down.”  They probably think they’re giving me sound advice, but that’s not the issue at all.

I feel like I’m always talking about my aches and pains (even if I’m not because I’m still talking about it in my head) so it irks me even more to remind a person that knows me that I have fibromyalgia.  Having said this, I barely talk at work.  I’ve become so dull minded that I can’t keep up with conversations, especially with people I don’t know well.  So who can blame them for not remembering, I can’t remember what I did 2 minutes ago.  

It’s so utterly frustrating not to be able to be there mentally like I was before.  I was quick with smart remarks, aced every test, was confident in my knowledge, excellecent at spelling and grammar and could remember things in stupid detail.  I rarely participate in conversations now because by the time I formulate a response to a statement everyone has already talked about a different subject matter and are on to the next.  I keep a personal planner and have a big calendar and look at them constantly because I’m so afraid I’m going to miss something.

I feel like it’s all just slipping through my fingertips and I can’t do anything about it.  I just have to sit there and look like a dunce because I can’t just shove my big “I have fibromyalgia! ” flag down everyone’s throat.  Shit, most people think that’s an imaginary flag anyways.

My biggest fear is that I will end up being seen as being unfit for my job.  I’ve already struggled so much with my health and working that I can’t fathom what I’d do.  It’s been 15 years and things just progress instead of getting better.
And all this just when I thought I was on a new road to accepting fibromyalgia…

The definition of chronic.

chron·ic

ˈkränik

adjective

  1. (of an illness) persisting for a long time or constantly recurring.

  2. So we all know this, painfully so.  In my constant struggle to accept what is happening to my body I’ve found that the very definition of chronic is one I will not accept more than anything.

  3. I’ve been getting excited at the prospects ahead these next few months.  I will more than likely be starting biologics after we get results back from my colonoscopy later this week.  In a couple months I’ll be seeing a doctor that is one of the top in his field to possibly have surgery.  On top of all of it, my back had been feel better.  Had being the key word.  The nerve pain hit hard this weekend and reminded me that even though things are better, they’re never gone for good.

  4. The flare up in my back is a bit of a reality check.  All my health issues are chronic and don’t have a cure.  The best you can hope for is that the pain subsides and doesn’t interfere with daily life.  I was building up hope thinking that once I got to the end of the summer that everything would be gone forever.  Things will be better, but I need to accept that I won’t be cured.

  5. This my sound like such a downer to people, but accepting that my chronic health problems means chronic is a big thing.  If I keep myself in a mindset that one day I’ll be normal and do normal things, I’ll never get there.  If I accept that I’m always going to have these problems then I can move on and find different way to do “normal” things and plan ahead for the inevitable pain that will result.

  6. I’m still learning that it’s not worth it to push through things because I’ll always end up in pain.  I’m still trying to learn what causes certain symptoms.  I still am trying to accept my chronic illnesses as chronic.

Disconnected.

I’ve generally always kept to myself and was absolutely fine with all the alone time in the world.  Now I think I’m going crazy.  I’m having a hard time coping with everything that’s going on and what the future might hold.  I only have my husband to talk with about it.  I don’t feel like anyone else I talk to (which is very few) will understand.  I know friends and family might take offense to that statement, but at this point I need someone who knows what I’m going through and can help me get to the next step.  I need more than the conversations that just consist of “Oh that sucks, I’m sorry,” although I do greatly appreciate it when someone cares enough to listen to me.

Since we’ve moved to a new state, I’ve isolated myself even more than normal.  I was already having worsening health at the time of the move and wasn’t looking forward to having to change jobs.  I’ve had a hard time coping with cutting my hours and changing my work to fit me better.  I have two jobs, a part time and a PRN.  I had to fight with the occupational medicine doctor for weeks to get them to clear me.  It’s all put me in a state of mind where I feel like I’m just going to be let go for my health at some point anyways.  Even at my last doctor appointment it was mentioned that there was a possibility of having a “medically-induced” career change.

This has made it that much harder for me to make any connections with people here.  The only time I leave the house other than the regular adult things is to go to work.  At my part time job, the group I work with is pretty close knit and a lot older than me.  My PRN job has some people my age with similar interests, but I want to quit that job so bad because I’m always in pain when I leave that I can’t get myself  to try to socialize.  This on top of being  complete ate up with my health situation at the moment makes me a real bore to talk to.

In all honesty, I’m probably depressed.  We already know my anxiety has been kicking in too.  Any chance I take to talk to people about things usually ends up with them either blowing over what I said or them telling me something ridiculous like I need to stop the doctors everything.  I’m afraid that my health is going to ruin my life.  I was doing really well…  I graduated college, got a well paying job, bought a new car and bought a house.  Now I’ve been dialing back on pay and hours to be able to work without killing myself, which makes it more difficult to keep our heads above water on the financial front and we may not move back to Indiana where our house is.

I really dislike uncertainty and that’s about all I have at this point.

I like having clear plans.  I like having executable lists.  Other than going to the grocery store, I can’t implement that in my life anymore.

I desperately wish an excel sheet could give me all the answers…  Or maybe I could find a peer that can understand me.

Anxiety set in.

I started writing in this blog as a way to blow off steam.  I may not have posted much, and to be honest, it’s not like I’ve had a super terrible journey.  Thus far, I’ve been pretty lucky and I’ve always kept that in the front of my mind when it comes to all my health stuff.

I sat down in the wee hours of the morning while everyone was asleep and compiled all that is currently happening in my journey right now.  It hit a little harder than I was prepared.  I’ve been so busy thinking about other things since we’ve moved that I hadn’t let myself really take in everything that I’m experiencing with my health and with my doctors.

This may all be thanks to part of my test results coming through yesterday from my last doctor visit.  Really just the fact that I don’t have all the results yet does not sit well with me.  And yes, I am that kind of person who signed up with LabCorp and Quest to receive all my test results after they’ve been sent to my doctors.  I’m an MLT and I need to know my results.

Anywho, I only got part of my results and that part was positive.  It’s pretty much a non-specific test but still has me on edge and got me focused on everything that’s going on.  Currently I have 5 specialists, am being evaluated for another autoimmune disease, possibly starting biologics soon, need to get setup to do physical therapy, and probably will have surgery this summer.  I can’t even imagine what else I would get myself into if I brought up any other concerns I have to my PCP.

If my body just gives up, I’m gonna be in a bad place.  And trying to get my health straight, not even counting trying to eat right or exercise, is damn expensive.  I’ve gotten to the point where I really can’t handle working full time in a core lab anymore, so I’ve had to lessen my hours (PRN in core lab and part time in Micro) which means less money.  I got on the best insurance I could (a.k.a. EXPENSIVE) and still want to puke to think about adding on all the other costs for treatments coming up.

Needless to say, I still struggle with my needs, wants, and identity…  In general and when it comes to my health. I never know what new and weird thing my body is going to do next and send my doctor on a witch hunt to find the culprit.  (But seriously thankful for this new PCP with an attitude like that.)  From muscle spasms, to hot and red knees, to my fifth bout of shingles on my damn face…

I guess I’ve always been kinda okay and laid back about these things because I hadn’t had a real concrete diagnosis and my symptoms didn’t stack up at the same time like they do now.  I’m getting diagnoses, I’m getting more abnormal lab results and I don’t know how to really cope.  I’ve been used to there being a sort of end point to things…  like, I got my xray and did my course of steroids so we’re done with that issue even though it’s not resolved.  I don’t think that’s going to be the case now with most things which maybe a good thing in the long term.

Who knows, maybe 2017 will be my healing year.  I’m just tired of waiting to get through it.

And Autoimmunity reared back its ugly head…

Okay, a little bit of a dramatic title…
Since being diagnosed with IBD I’ve been doing my research.  I actually didn’t know that it was considered an autoimmune disease before diagnosis, but G Almighty does that make sense.  I’ve been checked for some autoimmune disorders before and my new GP was concerned that it was a cause of things.
Anywho, I caught an interesting virus this time…
Alas, ladies and gentlemen, the 26 year old with immunity of a 5 year old…

image

I caught Hand Foot and Mouth disease.  The bottom 2 are from when it started (I know you barely see it on my face, but I couldn’t bare to show my hands) and the top 2 pictures are the current healing process about 2 weeks later.
For a period of time I couldn’t bare to walk or use my hands for much else other than using my phone.  I was in so much pain that I was in tears and almost ended up going to the ER because just walking to the restroom was near impossible. I missed a whole week of work.

It seems like my immune system just kind of picks and chooses when it works well.  Although, overall, it seems to have gotten worse (along with my IBD) in the last year.  Even getting out of a high stress environment hasn’t helped a whole lot.

Anywho, I wanted to share that because this peeling skin is driving absolutely bonkers!  Also, a coworker told me today that he was jealous of all my “vacations” and I’m not okay with it.  So there’s that, which may be another ranting post at a later date…

I have a thing! *confetti* (warning: there’s about to be some cursing)

Cursing in 3…

2…

1…

HOLYFUCKINGSHITBALLS I HAVE A REAL, MEDICALLY ACCEPTED AS FACT DIAGNOSIS!!!!!!
IT’S A MOTHERFUCKIN MIRACLE!!!

I’m literally so excited.
So I’ve been dealing with some gut related issues for 5 ish years now.  I shuffled some doctors around, tried a bunch of meds and waited and waited…   I finally found an amazing doctor.  Last October I had a scope that came with just some inflammation, nothing they’d pin as abnormal.  So things got worse and we did a capsule endoscopy. This time they must have found something because they said it was ‘indicative of inflammatory bowel disease.’  Obviously, I hear this and I’m like, ‘WHAT THE SHIT I ACTUALLY HAVE A REAL THING?!’
I’ve been trying to chase down causes for my constant discomforts and infections since I 13.  I turn 26 this weekend.  I’m so relieved.  Everything has always came back negative or normal…  finally, a thing!
So, new meds to try and 5 million more follow ups with my various doctors plus a fun procedure next month.  This little lady might end up feeling better…

And yea, I know….  this may not be something to be real happy about.  It’s an awful, painful disease that can make you real sick.  You know what though?  No one is gonna tell me that pain isn’t really.  Because everyone accepts that IBD is a real thing unlike Fibromyalgia. You can tell your friends that you can’t go out because your IBD is flared up and they’ll be fine with it.  Try the same but with fibromyalgia and people will think you’re faking and just being a shitty person.

I’ll take my new diagnosis, sir.  At least I can feel more confident  about what I feel.

A house with mystery guts

So in my last post I was feeling super hopeful thanks to a great new doctor.  Well I got my pathology report back and lo and behold it was negative. No explanation for the irritation or why I was having any other symptoms. I got a ‘keep taking your meds and see you in 6 months’ speech.
Another random occurrence in my medical odyssey.
I will be starting yet another wonderful journey to find a doctor, this time to replace my primary care.  She moved into a new office with all the nuts I can’t stand and the PA is only working at the women’s group.
So now I have extra motivation because this last week I’ve been fighting shingles.  This is the 3rd time I’ve had it and I’m 25.  Always in the same spot, it shows up under my right eye.  This bout has been the worst.  It moved up towards the inner part of my eye, down my nose, and swelled my whole bottom lid.  I also had some pop up on my mouth.
Adding this to regular cold sores and my bout of bells palsy years ago, I think I’m done with my face.  What reason does a supposedly health 25 year old go through this?  I honestly don’t understand.
I guess at least I can make the joke that I’m turning into a house?  (Get it?  Shingles…  haha)

Frustration and the downhill slope

So I went to the doctor the other day about my muscle spasms fully expecting to end up having to get an MRI… I’d been having spasms all over that were pretty painful. No dice. They gave me more of the same muscle relaxers that I said weren’t helping a whole lot and naproxen. If I want to be any kind of productive I can’t take muscle relaxers and I think the naproxen messes with my stomach. I can’t work with extreme muscle spasms or after I take a muscle relaxer. I really can’t be missing work either. Eye rolls ensued. This is one of the many reasons why I hate to even go to the doctor’s office.
I was upset and in more pain over the weekend.  I almost went to the ER because I was in so much pain.  It made it really hard not to freak out on people.  I get to hear people all the time at work complain about health issues and all I want to tell them is at least they really know what’s wrong and can fix it with medicine.  I’m stuck with a condition that most people think is fake and medication seems to do more harm than good.  There’s no surgery for me, no magic pill. I know it’s not a fair thing to say. All ailments are tough on those who have to suffer them. Sometimes I wish I had something different.
After the last few weeks it just seems like it’s gonna get worse from here on out.  For a majority of my life it has been just an annoyance,  but all the aches and pains are becoming worse and more frequent.  What am I supposed to do about it?
If this is gonna get worse, how am I going to continue working full-time in my position? How am I gonna have kids?  I can barely keep my house in order now. I can’t even grasp the concept of not being able to do for myself and not being in control.
I posted an article on my Facebook that talked about the legitimate problem in those who suffer from fibromyalgia…  They said the focus should be on managing symptoms.  This got me frustrated again and made me want to post another rant blog.  I want to focus on resolving the pain.  I want to go out shopping all day without swelling up and having so much pain in my feet and knees that I’m completely useless the next day.  I want to wake up feeling rested.  I want to not have my current symptom page at my doctor’s office be a full page long.  I want to feel energized for more than just an hour like once a month.
Ggaararaggggaaaahhhhhh!!
-rant end-