Humira, fighting my chemistry and waiting.

I’m back for my obligatory 3-month posting!!  Lord help me if I ever decide to keep up with things like I should…

So tonight is my 8th injection of Humira…  and I am frustrated.  I started Humira with a booster pack, so I had 4 shots then 2 weeks later I did 2 and now I do only 1 biweekly.  Within a couple of days of the first dose I had immediately noticed my brain fog clearing and I was feeling more energetic.  Since I’ve gone down to one shot, the brain fog and fatigue is back to where it was.  The whole reason I went on it was to help what we believe is joint pain associated with Crohn’s and it never really touched that.

Of course, Humira takes time to build up in your body.  I went to my 3-month appointment completely expecting to change up the treatment plan, but nah, 3 more months of waiting.  (Side note: waiting is my whole life.)  They repeated some labs, which they still haven’t gotten back to me on…  but it looks like the inflammation markers for my intestines are back in the normal range which is great.  I still have some labs that are perplexing, but I need to discuss those with the doc to see what she’s thinking.

In my mind, I’m thinking that we just ruled out Crohn’s as the cause to my joint inflammation and pain…  but who knows.  I was so desperately hoping this was the solution to 15 years of all-over aches and pains.  So the journey continues…

A recurring event in my journey is going back and forth between trying meds to help and then deciding that I’m better off without them.  I’ll try what the doctor suggests, we’ll make some changes for a while..  they’ll usually just cause side effects and not really help anyways and after a year or two I’ll just throw my hands up and go down to the bare minimum of what I need to function.  The least I’ve ever been on as an adult was 2 – birth control and allergy meds.  Oh the fucking freedom!

So, having more reasons than the usual ‘None of this is working anyways’, I ditched everything minus vitamins and medicine to keep Crohn’s and GERD in check.  The first thing I did was work on getting off of my antidepressants.  For those of you who don’t deal with chronic pain, yes, doctors prescribe antidepressants to treat chronic pain and that does not equate to “I’m in pain because I’m depressed.”  Do some research if you need.

I was not prepared for what my body was about to go through.  Previously I had missed doses of a similar medication and it caused a weird electrical sensation to pulse through my body.  Super weird, kinda messed with my head, but not a big deal.  This time I was coming off of 2 antidepressants and at the end of tapering down I ditched my birth control too. (The BC is important, we’ll get to that in a second…)

The electrical pulses got super intense, I felt dizzy most of the time, definitely had the fish bowl thing going on and it made my super depressed to the point where I was absolutely scared for my well being.  This all also blew my aches and pains way the fuck up.  This shit was serious and my doctors gave me no warning before they prescribed it or when we were making a plan to tapering off.  The worst for me was the Cymbalta that I didn’t even want to really try in the first place, but two of my doctors were pushing for so I agreed to give it a shot.  If you’re ever interested, do some research into Cymbalta withdrawal.  The pharmaceutical companies don’t really address these and don’t offer an actual plan or forms of the medication to taper safely.  I am so thankful that mine only lasted for about a month.  Some people deal with this for so much longer and, honestly, I don’t know what I would have done if I had have dealt with it for longer than I did.

I think stopping my birth control also made it worse.  I had legit been taking some kind of pill, had an implant or on the ring for a good 13-15 years without any break.  I had my reasons to do it and for the timing.  I don’t regret it.  I was having some issues, for which I’m still scheduled to have surgery because of and rather not go into full detail about.  I did some research after my last exam because the doctor pointed out something that no one had mentioned before.  In my readings, I saw that they casually mentioned that birth control maybe could cause it and that it maybe could cause some of the issues I was dealing with.  So fuck it, that’s an easy thing to try for something that is making part of my life complete hell, might as well try it.

I should get a goddamn doctorate.  When my doctor mentioned it, he acted like it was nothing and I didn’t need to get it fixed.  Seriously dude.  I swear, I stopped my birth control and it has completely went away.  I even feel like I can feel emotions again kinda.  Like, what is that?  And I was taking this for how long and no one thought maybe I should just not for a minute?  I just cured one of my goddamn ailments, that’s amazing, why has no one else been able to figure this?

So here we are.  Currently the all over pain is up and I’m doing what I can.  Here’s a list of things I’m waiting on because, holy crap, my life is literally just me waiting:

  • 3 months to see my rheumatologist to see if she even wants to treat my fibromyalgia
  • humira to kick in
  • whether or not to actually get surgery because of too many factors
  • my doctor to reply to my message from last Monday because work wants me to get vaccinations all the damn time and I can’t just do it like a normal person
  • winter to GTFO because cold weather makes everything worse
  • depression to GTFO because it’s a bitch

I could make this longer, but I realize people have lives.

So that’s it. (JK, I could go on forever.) Apologies for the vague bit, I know I usually don’t withhold anything, but that one is a bit personal.  I am planning on making another post soon talking about my forever struggle of work and health, so hopefully I won’t be a terrible person and actually get that posted here in the next few days or so.

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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.

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.