From Surviving to Living

It’s easy to say that Crohn’s hasn’t been bad for me, especially having talked to many others with this disease and seeing their struggle.  Physically, it really hasn’t been bad.  Mentally, though, it was detrimental.  My chronic pain set in around 2002, but it was fairly manageable until 2015.  Still, my focus in life shifted.  I was holding onto what I pessimistically referred to as “romantic” ideas of life.

I wanted to do everything as a kid.  No lie. I wanted to do gymnastics, play football, be a professional ice skater, snowboard, learn cello, be a fashion designer, paint, act, travel the world… everything.  As I got older, I realized that I needed to prepare myself for survival, not how to satisfy all my whims. Slowly this thinking took over everything.

So when 2015 rolled around I had been working in the hospital, kicking ass at my job and feeling pretty good about myself even with a considerable amount of pain on the regular.  Then the vestibular migraines started and all the embarrassing symptoms that comes with Crohn’s really kicked in.  It affected my work performance and some days I just couldn’t do anything but lay in bed.  I felt terrible and I was just embarrassed.  I still ran my ass off and worked my hardest, but I came home every night in tears from being in so much pain and dealing with coworkers belittling me for the issues I was having and trying to make me feel lazy when my body was literally trying to destroying itself.  I ended up leaving in 2016 and taking a totally different job that was easier on my body, but making less money. It was honestly the best thing I could have done, but I was a fish out of water.  I was going through a bunch of medical tests, started going back to school (I’m a lifetime student basically), and having new medical problems pop up all while trying to learn this new set of skills.  I was such a mess.  I am so thankful for the supportive people that helped give me the reassurance and confidence to keep on.

Unfortunately I ended up with a back injury and that was really the final blow to my mentality on life.  Without going into too much detail (I’ll hopefully be writing about this more later), I ended up occasionally needing a walking aid and I required help getting dressed because it was just too painful to do myself.  I felt completely useless.

Then my husband took a job in another state.  We originally had planned to stay where we were and just get him an apartment there to stay during the week, but I just couldn’t do… life… by myself.  A few months later, I joined him.  That move was so hard, though.  The next day I could barely move, let alone walk.  I spent the whole day in bed crying from the pain and from feeling sorry for myself.

I was in a bad place.  Hell, I’m still trying to pull myself out of that place some days.  I was trying recovering from that, I was having a lot of anxiety and depression, my Crohn’s would act up every once in awhile, and still having weird health problems all the time.  I struggled to hold down my part time job between my body revolting and medication side effects. We also went through three deaths in our family.  It was hard and I was so incredibly hard on myself for everything.

Dealing with the grief of our losses made us realize we couldn’t drag our feet anymore.  Three months later I became pregnant and we began planning on trying to get back home.  It never stopped being challenging, but we pushed ourselves to try to change our mindsets.  There was no use dwelling on the negative, we had to keep looking towards the end goal and that’s really what got us through.

My health still isn’t the best, but that’s okay.  I’m going to continue to work at it.  I’m going to continue to work on my mental health and find what really makes me happy.  I’m going to be better at recognizing my limits and sticking up for myself.  I’ve decided to stop surviving and start living.

A Retrospective

The last few years have been a whirlwind.  Even though my health issues started 16 years ago, there’s been a lot to cope with.  Let’s see if I can timeline this…

2015 – My gastrointestinal problems got worse.  I was having a harder time working and came home crying almost every night because of how much pain I was in.  I knew I wasn’t going to be able to keep up the pace I wanted anymore at work and started looking for a new job near the end of the year.  I also found a GI doc that actually listened to me and had my first colonoscopy.

2016 – I got a job that was way more flexible and didn’t guilt me for being sick.  I was still having a super rough time with multiple health issues and dealing with side effects of medicines.  I had a pill cam endoscopy done in March and was finally told I had IBD.  In April I had a procedure for a fissure that I had for 5 years, that nobody before had treated like it was a big deal.  In May/June I injured my lower back.  I was so bad that I could barely walk at times and the pain was excruciating.  My husband took a job in another state soon after and we thought we could handle it.  With my back not getting better, I could barely keep myself together.  I had trouble walking and getting dressed on my own.  By August I couldn’t do it anymore and we decided that I would move to be with him.  Getting a job was tough; they didn’t want to pass me on the physical and I had to fight for 2 months for the position.  It was a part-time job I could handle.  I knew I wouldn’t be able to work full-time anymore.  At first they said I could only work if I stayed in a wheelchair, but thankfully by my first day I had gotten a doctor to change their mind.  The whole back injury put in a really bad place in my head.  It’s hard being 20-something and try to accept that you need a walking device and have to jump through hoops to get doctors to do something.  I also starting having a lot of other weird pains and embarrassing issues that I had to jump from specialist to specialist about.

2017 – I started physical therapy for my back, finally after almost a year.  I was pain every day, but it got better.  I was able to manage it better.  I was seeing a Crohn’s specialist that made me feel a million times better about tackling my situation.  Throughout the year we did a lot of tests to rule out other things to find the cause of my (then) 15 years of joint pain and came to the conclusion that it was indeed a part of my Crohn’s.  (One unfortunate event during this process was finding out that I was allergic to sulfa drugs.)  I started Humira in August.  I was also having a lot of memory issues.  It made work terrible and I felt like an idiot.  Things started to improve slowly with Humira.  I ditched my birth control and the antidepressants my doctors insisted would help with the pain (they didn’t) and, after dealing with the effects of stopping those things (an absolutely terrible month and a half while also dealing with the loss of a family member) a lot of things got better.  I got scheduled for a laproscopy for February of 2018 to see if they could find the cause of my weird pains and issues.  In October, my husband and I decided we couldn’t wait on my health to back to 100% before having kids because it wasn’t likely to happen any time soon.  I ended up seeing a counselor during this year; I had built up so much anxiety, losing family members way too often and the depression that came with trying to accept that I couldn’t keep up with life the way that I used to was all getting to me.  Seeing a counselor was also said to “help manage my chronic pain.”  Wanna hear something funny?  It didn’t help.  After a handful of months, my counselor said I no longer needed regular sessions.  I haven’t needed to go since then.

2018 – We started off with the best news.  We were actually pregnant!  I got to cancel my laproscopy, which was a joy because those weird pains and issues had almost gone away already.  Since then we have been dealing with waves of tons of issues and short times of barely any problems.  My medicines are doing their jobs decently and overall my body has been taking to this whole pregnant thing pretty well.  Currently I still have some issues that we have to wait until after baby to resolve.  We also have our fingers crossed that I don’t crash after I deliver our daughter.  I have high hopes now that we are back home, in our own house and have more control on our environment.

It’s been a goddamn journey.  There’s been a lot of obstacles and a lot of fighting to get help.  Making this timeline, I still can’t believe how long it took me to get help from my doctors.  I’m still never 100%.  My back still gives me issues, I still have issues with my GI tract, I still have joint pain and muscle spasms, I still have those weird pains, and I still get the most random bullshit problems.  I’ve learned a lot, including my limits (still working on this, forever working on this…).  I think we’ve made it out of the dark times, though.  I have a lot of hope for my health going forward and for everything else in life.

Pain and Praise

I was sitting and watching a wrestling program a while back and the commentators started talking about how the winner has overcome such adversity due to his earlier “rib injury”.  This started me down a thought process rabbit hole about how people are praised for making it through the pain of an injury and how that greatly contrasts to what a fibromyalgia patient, or really any chronic illness patient, is treated.

When you heal after a surgery, you’re praised for your strength and congratulated for making it through.  Those who ‘defeat’ illnesses are celebrated.  You’re back to ‘normal’ and that’s great.  The praises are absolutely deserved.  Being ill or injured sucks and you have to fight to get back to your normal self.  It’s tough and the sense of relief when you overcome it is great.  Getting that praise from others not only helps push you to keep going, but helps your self esteem once you’ve made it.

So why don’t we praise those with chronic pain for overcoming the pain?  Some days, just taking a shower and making it to the pharmacy to get medicine is enough.  Other days we push through the pain to make it to our jobs, make dinner, clean the house, and make sure everyone else is taken care of.  We fight ourselves just to do what is expected of us.  We have excruciating days and nights, but keep pushing ourselves forward.  Some people may have great support systems that vocalize their praise, but it seems the vast majority does not.

Is it because our pain doesn’t end?  Is it because you can’t see it?  Why does our continued struggle not deserve praise?  We push ourselves to try to appear ‘normal’, but don’t receive the encouragement to keep doing it.  We hear the crude comments when we stop trying, that’s for sure.  Do we hide it too much?  Can you not tell what’s really going on?  I know I’ve gotten in the habit of not discussing my health too publicly because people don’t know what to say and seem uncomfortable.  A lot of the times people just don’t understand.

We cannot get rid of our pain.  There is no healing it.  We have no cure.  And that is not because we are weak.  When we keep living our lives, that shows that we are strong.  Every day that we make it to work is a show of strength.  Every grocery trip.  Every shower.  Every load of laundry.

You may not understand the pain, but know that it is there.  We may not vocalize every pain and ache, but that does not mean we do not feel it.  If you know someone struggling with chronic pain or a chronic illness, take the time to recognize that.  Recognize their strength.  Recognize that they’re fighting.  Praise them.

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.

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.

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.