Posts Tagged: spoonie

My Health, My Treatments, My Choice

September 29, 2015 Katie A Chronic Illness 0 Comments

Yeah, yeah, yeah. . . I know I suck at this whole blogging thing, but let’s face it: this summer was brutal for me. Two ER trips due to Endometriosis, a shitty doctor who told me my pain was “in my mindset” and the agonizing wait to get into a new clinic (which has a much happier ending).

I walked out of that new clinic with yet another diagnosis – one that makes so much sense when it comes to my type two diabetes diagnosis. I was diagnosed with PCOS and told that between this, the diabetes and the endometriosis that I am unlikely to be a candidate for pregnancy.

It was crushing, honestly. I’ve cried about it. I’ve been angry.

This diagnosis though makes sense. The symptoms, the diabetes… it all makes sense.

That being said, this post was triggered and inspired by one of my classes today. I’m back in school after a semester off and while I am loving it, let’s be honest – it’s draining. I come home and nap after my classes before I go to work for the afternoon. I try and get homework done early in the week, but that has yet to happen. I’m just wiped out.

Today we were discussing gender and how our identities often intersect with other aspects of our lives. Some of the things I listed were my sexuality (I’m openly lesbian), a spoonie, endometriosis warrior, a chronic illness fighter and someone who has invisible illnesses.

When it came time to discuss these with other classmates in smaller groups, I was hesitant. I didn’t want to share this because it’s so hard sometimes. It’s frustrating to hear “but you don’t look sick”, or “you’re too young”, or “you’re too healthy and thin to have diabetes”, but guess what? I do. I fight every day. I push myself every day. I don’t want to have these – but I do. 1efbedb94b1252751abd144718c73922

I am sick.

One of the people in my group is very vocal about her approach and a family member who has been ill. Which, I appreciate – it’s nice to hear from someone else about what they may be dealing with.

The problem I have is that today, when I brought up my illnesses – all of them being invisible – I was immediately thrown into a whirlpool of health treatments that don’t mesh well with me. They aren’t something I’m comfortable with, something I feel that would benefit me. She didn’t seem to understand that and kept going on and on.

When I talked about how a recent trial of me being off of metformin for the diabetes sent me back into the range of the 200-300 blood glucose level, she said I just need to get off of the medication and let my body detox.

Yeah, no. I’m not willing to risk that and put myself in a possible position to end up in the emergency room because my blood glucose won’t come down to a safe level. I’m not willing to risk going off of my mood stabilizers or anti-depressants. I know what I am like without them, and I don’t want to go there again.

I know how I am without being on my current birth control pill. It sent me to the emergency room twice this summer. I bled for six weeks. I was sick. I was in so much pain I could hardly even eat.

Let’s face it: what may work for you, may not work for me. And that is totally fine. We all have different bodies that react to things differently. Right now, my body is doing fine on the metformin, it’s doing really well with the new birth control pills to help my Endometriosis, and my mood stabilizer (while I am adjusting to a higher dose currently) is worked wonders.

When my girlfriend and I talked today about this entire thing, this is what she said:

“I, personally, have seen the amazing benefits your treatment plan has had on you: a happier, healthier katie.  ❤”

Having her and my friends and family at my side helping me through these last few months has been life saving. I’ve been in a very dark place for a long time before I finally started getting treatment and for others to see the changes in me? Means the world and really hits home that I am doing what is best for me.

Let me make my own choices with my doctor and psychiatrist and gynecologist about what works for me. Let me take the medications that keep me stable, keep me out of the emergency room. Let me handle my own treatment, knowing what works for me.

Being chronically ill is hard enough as it is, but knowing what works best for me? Has been amazing and I am not letting that go anytime soon.

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Exhaustion, Endometriosis and Endless Appointments

July 9, 2015 Katie A Chronic Illness 1 Comment

I’m sure many of you will understand how utterly exhausting it is to just get through one appointment, much less three appointments in one week – two in one day. Wednesday was brutal and I am beyond exhausted and still trying to sort everything out, even though they were both good appointments and I got a lot accomplished in one day.

Monday was my second round of therapy with V, where we briefly talked about my recent bipolar diagnosis, how I was adjusting to medication so far and then we moved onto talking about my coming out experience (you can read about that here) and how it’s been such a struggle for me since it happened. It was hard, but not as hard as I thought it would be. I thought I’d break down in tears, but I didn’t. I thought quietly at several points during the session, but I really felt somewhat better when I left.

I go back next Monday morning for round three before I head to work for the day. I’m assuming I’ll be going weekly for awhile, at least until we start to make a dent in some of the things that I need to deal with and start working through. It’s overwhelming, but I know I have a good team behind me.

Wednesday morning started off crazy. By the time I was ready to leave to pick up my mom to go to my appointment with me, I couldn’t get my car started. I didn’t pick her up until ten minutes before my appointment and then I had to speed over to the office, but we made it on time. The entire way, I could feel myself start to panic. The stress of the morning plus knowing I could get some huge results had me all worked up. No matter what I did, I couldn’t calm down.

We waited forever. Nearly over an hour. So frustrating, but what can you do?

Finally get called back, and no surprise – my blood pressure is fine but my pulse was fast. I explain it’s anxiety, it’s always that way… so they recheck it in a few minutes. Still high. Telling me to “relax” doesn’t help, it just stresses me out more. Ugh.

Doctor M comes in and tells me my lab work results and I am floor. My A1C dropped from a 10.3 at diagnosis in February to a 6.9, which is under where they want a typical diabetic patient. I almost fell out of my chair and I am still in shock, holy crap. He also said that I can stop all medication for diabetes and just continue to eat healthy and exercise and test daily. I go back in three or four months for another round of lab work to check and see how things are doing.

I also left with an inhaler for exercise induced asthma and a refill of my anxiety/migraine/heart rate medication. Apparently the new call center that was forced on the clinic never relayed the refill request I asked and yeah… not happy. My nurse told me the secret about who to call and what extension to use, so now I don’t have to worry about it!

The big news is that I left with a referral to a gynecologist since my Endometriosis has only been getting worse these last few months. I’ve had a period for two weeks now, doubled over in pain nearly every day and nothing I’ve tried in the past seems to be helping anymore. I’m going to be pushing for surgery. I can’t stand this pain anymore. I go in on July 28 and hopefully we can get things rolling and begin some serious treatment.

Wednesday afternoon was my visit to Planned Parenthood. The pills I got in November just… weren’t working. I was still in pain, still having crazy periods and just… not working the way we’d hoped. After paperwork, waiting and surprise another slightly high pulse, I finally talked to a doctor and got new pills. I started them last night so it’s still too early to tell if they’ll help.

The doctor there also said it sounds like surgery is the next step since everything we’ve tried hasn’t worked and to make sure I tell my new gynecologist this when I see him at the end of the month. So, that’s what I will be doing.

It was an exhausting week for appointments and I know it’ll be this crazy for awhile.

I’ve spent today resting, and plan to curl up again and watch some television for the rest of the night. I go back to work tomorrow for a short shift, and I’m excited to see my work family but I am hoping I am not this tired and sore when I go tomorrow.

One day at a time, right? Just keep breathing. Stay strong.

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The (Rocky) Road to Recovery: My Journey So Far

April 18, 2015 Katie A Uncategorized 0 Comments

The last few months have been… interesting. Now that I have insurance, I have been in and out of doctor’s offices, blood work drawn, trips to the pharmacy have been more than I can count – but it’s all part of a process. It’s all part of being healthy again, living a new life and on the road to recovery.

On February 12, 2015 – I was diagnosed with Type 2 Diabetes.

My entire life changed in that office. For awhile, I didn’t even feel like it was real. This couldn’t be my life. I was healthy, active and while yes, I could have eaten better at times, I tried my best to live a healthy lifestyle despite a hectic work life and balance school.

It didn’t matter. My blood glucose fasting results were a sky high level of 236. Any higher, and there was a very real chance I could have headed to the hospital because my glucose was too high. That’s a very scary thought and one that pushes me daily to get myself onto a healthy diet, keep active and make sure I take meds to help control my diabetes.

It’s barely been two months since I’ve been diagnosed. In that time I have:

– seen my numbers drop from the high 200’s to the 100’s (with a couple hypoglycemic episodes in there)

– started on two medications for diabetes, with insurance denying a third

– I attend my first diabetes class Tuesday morning

– Tackled a fabulous vacation and did well on my first big trip as a diabetic

– Proudly wear a medic alert bracelet

But it hasn’t been easy. Not at all. I still have not been able to cry over this diagnosis, because in a lot of ways – it doesn’t seem real. It doesn’t seem like this is my life. But it is. This is my life and I have to live it in the best way that I can to keep myself healthy. I have seen what out of control diabetes can do to people and I don’t want to go down that road.

I have had people tell me to my face that I “need to get on that” without understanding the negative impact it has on me. I’ve had people tell me that it’s because of all the sugar I’ve had that caused it, nope. That’s not it either. I have a family history of it, it’s genetic.

Recently, I’ve had someone I was close to decide to cut me out of their life because I was unable to make it to an event due to the fact that I was sick from the diabetes. I had been dealing with highs and lows and numbers bouncing all over the place, feeling weak and like I may pass out and realized, I have to stay home. I have to take care of myself and cannot risk an ER trip.

So, I stayed home.

Then I was berated, belittled, accused of some pretty nasty stuff and now feel like I have been cut from their life. All because I needed to take care of myself, because I was sick. Because I knew that had I pushed myself more than I already had, I would have ended up in the hospital.

This diagnosis is hard.

It means that I have had to make major changes to my life immediately. It means that I have had to give up things I loved, change my diet completely, test my sugar, learn my limits and make sure I take my medications every day at the same time so I don’t get worse.

Diabetes means that I have had to learn who really stays at my side and supports me, or who walks away. It means that people I thought I was close to had no idea I had diabetes until I mentioned it randomly. It means that I have had to say no to things I wish I could do because I am battling a low moment or I feel sick from the medications.

Most of all, it means learning to take care of myself. Learning that I have to take care of me and put my health first. It means that I can’t ignore the symptoms or a high or a low and that I have to act quickly. It means that there are days where no matter how well I eat and stay active, I’ll still have a high. Diabetes means that I have a life long, chronic illness.

It’s not going to go away. Yes, it can (and will) get better with management – but it’s been a long two months. Two months in and I still have so much to learn.

The most important lesson I’ve learned so far?

Take care of myself, no matter how hard it is, no matter how draining it can be. I have to take care of myself so I can be healthy for life and for my loved ones.

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