300 days later
300 days after my lip surgery I have a small white scar that is slowly fading away. While I was hoping to not have any leftover marks on my lip, I’m just happy that the granuloma didn’t come back!
Author: jaymejojo
Day 2
Day after surgery. Already looking better! Kinda surprised some I don’t heal very fast at all! One pleasant side effect – if you look past the horrible cut – Angelina Jolie lips. At least until the swelling goes down.
Fat Lip Girl
So it’s been a while since I wrote because I’ve been dealing with some health issues. Surprise, right!?
Back in April I noticed a smallish blue/purple bump forming on my lip. It didn’t hurt and I thought it was a bruise at first. But it didn’t go away and by July I decided that I need to see some one about it. My primary care doctor recommended a dermatologist… A few weeks later the dermatologist biopsied it and the results came back benign but the process of collecting the tissue sample inflamed the area and it began to grow and bleed almost constantly.
I journeyed another hour away to see another doctor and was told that it had progressed into a pyogenic granuloma. But since it was in the middle of my face, he felt that I should see a plastic surgeon for the removal.
So after 4 doctors visits and almost 6 months this is what I’m left with. 
Hopefully the healing process will go well and it won’t return. A pyogenic granuloma is a inflammation and irregular growth of vessels and capillaries in a localized area. They don’t currently know what causes them (although they tend to be found commonly in pregnant women – and NO! I’m not!) I’m curious if it could have any link to my Lupus or APS….
Right to the Ribs
… And not the delicious finger licking kind either.
Did you ever wake up in the morning and feel like Bruce Lee just roundhouse kicked you in the ribs.
Ouch.
We’re supposed to be getting some bad weather in the next few days and Mother Nature thinks it’s a great idea to make me a human pain barometer every time!
Hope you all are feeling better than this!
Warning: Flare Ahead
Recently I’ve been thinking about my first flare and whether there were any signs or some kind of signal that could have foretold the pain that I was soon going to be in.
Pretty sure a flare feels exactly like being trampled by a T-Rex.
And I’m starting to think that (for me mind you) my immune system whacked out much sooner that I initially realized. While I was initially diagnosed with Lupus and APS in the Spring/Early Summer of 2010, my joints and legs had been painful since the very beginning of January. I waited several months before seeing a doctor about my joints for two reason; fear of what they would tell me and a lack of insurance.
Looking back, I think my immune system might have been trying to tell me something was wrong much earlier than that. The Spring/Summer before my diagnosis I had was dealing with a horrible bout of multiple UTIs AND yeast infections. Within a 5 to 6 month period was treated for 5 UTIs and 2 yeast infections.
Now maybe you’re thinking – “So what? I’ve had a yeast infection before” – but I had NEVER had either of these two things. A 24 year who suddenly has multiple UTIs and yeast infections with no history of it before then. It was weird. Not only that – the medicine didn’t seem to work. I went through several different antibiotics in an attempt to find the one that would kill the germs. A few months after I got those issues under control, I was hit with the fatigue. At the time I didn’t think much about it. I had just graduated from graduate school and was searching for a full time position while working at a local store. I was busy and thought it was just stress. But it got worse. To the point where I would come home and beg my boyfriend at the time to just go to bed instead of going out (my exhaustion eventually caused the boyfriend and I to break up (among other things), thank god). And by the end of the winter and I was in a full blown flare.
Hindsight is 20/20 – at the time, I had no idea that all these crazy things happen might be related to each other (technically, I still don’t but it makes sense to me). Skip forward a few years, and low and behold – it’s happening again. This Spring/Summer I’ve been dealing with multiple sinus and ear infections (and multiple antibiotics) and now soul crushing fatigue (and oddly enough, insomnia). Maybe I’m wrong. Hell, I HOPE I’m wrong. I don’t want to go through the pain of another full blown flare – mini flares are bad enough.
Feeling bad for feeling bad.
I don’t know if you can call this a Lupus related post or not. Last week my husband and I got to go on vacation!! And we chose …. New York City! It had been ages since I had visited and my husband hadn’t been since he was 9!
We did some tourist stuff… Walked around Times Square. But mostly we played it easy.
The Cloisters were beautiful on a rainy Tuesday morning.
But the second day we were there I started to develop a sore throat and stuffy ears. I blamed it on the wind at first and then allergies. It was annoying but not debilitating and I let it go.
Let me tell you flying with aching ears is a bit€h.
When we got home I saw the doctor – got allergy meds – got worse – saw another doctor – got antibiotics. Doc decided that whatever it started out as it had progressed to my lungs and was the start of bronchitis. I was told to take meds and stay home for two days.
And here is where my conscience kicked it. I’m Midwestern – missing work is a horrible thing! While I had gone to work Monday – I took Tuesday off to go to the doctor and then rest. When the doctor told me to take another day off I panicked. I had just gotten back from vacation! I had already missed over a week of work and I had an important assignment due on Wednesday! I COULDN’T MISS WORK!
So I went to work. Against doctors orders.
I had gotten the assignment done around lunch and thought about cutting out early to go home and rest but I figured I was already there no use in leaving early. So I stayed. Mistake.
Wednesday night my cough kicked back in with vengeance and my ears (which had gotten significantly better since New York) started hurting all over again. So here I am – Thursday – missing another day of work because I didn’t listen to my doctor.
In some ways this does tie in with Lupus. Many others out there have the same problem missing work as I do – they feel lazy or like they are slacking off when their health means they have to take a time-out. Maybe even co- workers make fun of you for missing days. Ignore them- do what’s best for your health. If you have sick days – use them if you need to, don’t hoard them.
It’s advice I’m trying to take myself.
Time Crunch
So several months ago I decided that I was going to start reblogging again. Good idea – bad timing. I work full time in a field that every 18 months has an “outage” period where full time staff work gruelling hours. Usually this crazy work period only last for about 30 to 60 days, but during that time I work somewhere between 70 and 80 hours a week.
Needless to say it was a bad time to try to start blogging again.
I know that there are a lot of people with Lupus that have symptoms that are so severe that working full-time is impossible, so I am grateful to be able to handle working full time. But the 70-80 hours weeks take it out of me.
The extended hours have been over for a few weeks and my body is still trying to catch up – with sleep and rest. Right now I’m stuck at home because of a flare. This last weekend a huge storm front moved through the area and my joints decided to rebel. Does anyone else have mini flares during severe weather season?
Testing 1,2,3…
Testing
The irony of the situation doesn’t elude me. The doctors are worried I have a blood clotting disorder, so they take me off the prescription that will keep me from getting clots in order to test me for said disorder.
Well I guess I understand that they want to be thorough. My initial tests in 2010 were positive but it usually takes 2 positives tests to get a diagnosis. The second, while positive, was unfortunately performed after my DVT had been found and I was already on Coumadin.
This THIRD round of tests was not much more conclusive – a few of the larger test lupus anti-coagulant and the venom test came back negative (both were positive at my initial testing). But one – IgG protein – was through the roof. The hematologist actually commented that it was one of the highest results he had ever seen. So because of this result and the fact that I had had an unprovoked DVT in past meant it was back on Coumadin for me.
All of this testing and retesting has left me a little more aware at how hard it can actually be to get diagnosed. Many times people who go to the doctors complaining of joint pain, fatigue, facial rashes etc can spend years and thousands of dollars trying to find a diagnosis to their ailments. I was lucky the first go around. Since I went to a rheumy in the middle of a flare, they were able to properly test me for several possibilities. But the blood disorder has been a little trickier – if I hadn’t been aware of my body and about the changes in my legs, no one may have ever caught my blood clot. I didn’t present with overtly classic DVT symptoms – my legs swelled, but very gradually and I never had any bruised or hot spot on my leg. I did the research and voiced my concerns – even when the doctors seemed incredulous. It paid off – the DVT was found before it caused lasting or severe damage.
Am I happy that I have to be on Coumadin for the rest of my life – no. There goes the tattoo that I wanted to get… but I’ll survive without it. Being on Coumadin also gives me a peace of mind, yes – I have to be more careful of my surrounding (which is hard for a klutz like me) but knowing my blood is thinned keeps me from worrying (too much) about every little pain.
Back to posting
It’s been a long time since the last time I posted. Not that everything was roses, but it’s partially because I was feeling better!
What!?
I know ! It’s hard to believe that after dealing with so many problems for so long that I was able to actually feel good about myself. If only for a short while. So while I don’t like using this website to bitch about how crappy I feel , I’m coming back to it because there have been some new developments. Yes, I’ve had many more symptoms recently than I have had in the last 6-8 months but I’m hoping to keep this blog going after the symptoms begin to subside again <knocks on wood>
So at the beginning of the year my rheumy finally convinced me to go see a hematologist. Because of my Antiphospholipid Syndrome, I probably should have gone long ago but for some reason I put it off. But my rheumy had been on a mission to get me taken off Coumadin. According to her, she felt uncomfortable leaving someone my age on blood thinners for the rest of my life…. So instead of taking me off them outright I suggested (and she agreed) that I see a hematologist to get an opinion about my Bloooood!!
Here’s where it gets complicated. In order to check my blood for the problems that the Coumadin treats (in my case blood clots from Antiphospholipid Syndrome) I have to be taken OFF Coumadin. So for the month of January I was blood thinner free and on a nightly regimen of aspirin.
The month was stressful and painful. Fortunately I didn’t have another blood clot form while off the Coumadin but pain that I hadn’t had in months came back with a vengeance. Most people look at me strangely when I say that my veins hurt – but I don’t have any other way to describe it. I noticed a dramatic increase in the pain in the back of my calf and in my hip area (areas that I have had problems with before). While it’s hard to describe to someone who has never had a clot, it reminds me of a the pressure you feel when your leg has fallen asleep and you are trying to wake it up / that mixed with an intense pressure.
More to follow…
Busy life ( originally posted May 2013)
Hey! It’s been a long time since I’ve posted anything… Here’s why-
I GRADUATED!
This last spring was my last semester. So I can finally say that I have two masters degrees. This one in Library Sciences and the first in Art History. After I first got sick, I got really depressed. I was sure that I was never going to be able to enjoy a full life – no marriage, no job, no prospects.
But I’m stubborn – so the first thing I did was want to prove my own depression wrong. I’ve always loved libraries and before I went to get my Art History degree, I had considered getting a library degree. I choose not to because I wanted to leave my hometown (there is a good library school in my hometown).
So to back to the story – to prove myself wrong I decided to go back to grad school. And this time not only did I go to school full time but I also worked full time. SUCK IT LUPUS.
Not the only thing left to accomplish is to find a job. Unfortunately that is going to be the hardest part. My SO has s very good job where we are at so I have to limit my search to a certain area.
Oh well – one more goal!
Loopie Life 