Sunday, December 20, 2015

wishing for a ...

I'm really not handling my pain situation well this holiday season. The weather here in Michigan got warm last weekend and now it's back to frigid which has really played havoc with my head. And my gastroparesis pain is getting worse. Plus not being able to eat my favorite Christmas treats is really a bummer.

Wednesday, December 16, 2015

Migraines and The Holidays

I took this photo in an antique store. I love those vintage ornaments. My migraines have been going crazy right now. I think because of the holiday depression and the weather has been unusually warm with lots of rain.

Monday, December 14, 2015

Holiday Depression Monster isn't impressed

I tried to give one of my holiday depression monsters some Christmas Cheer but he doesn't seemed impressed.

Friday, December 11, 2015

This time last year...

I can't believe it was this time last year that I was having the surgery for my deviated septum for my sleep apnea and migraines. I had such high hopes for the surgery and how it was going to help. All I wanted to do was get the surgery over with and get my sleep apnea under control. Then everything went to shit in April with the pancreatitis and the gastroparesis.

I still never had my follow up sleep study. I still take off my mask during the night and frequently I can't get to sleep with it on cause my stomach hurts so bad. I haven't had the opportunity to see my migraine doctor. Everything has been steam rolled by my stomach problems, which are only getting worse with the pain, not eating and the weight loss. I can't even begin to explain the epic exhaustion that I've been experiencing. I'm caught in that "try this medication...have this side lets try something else" loop with the docs.

Plus that horrible holiday blues depression is upon me. It comes every year and it just gets worse.

Monday, December 7, 2015

Migraine Holiday Head

I saw this little angel Christmas decoration at an antique store and her hair looked like exactly how I feel during the holidays with my migraines. So I took her photo and I used Font Candy to make this.

Friday, November 20, 2015

Holiday Depression Monster

The holiday depression monster has been sneaking up on me, especially with my newly added health problems. I feel bad for my migraines right now cause they are being so neglected.

Thursday, October 29, 2015

New Gastroparesis Blog

I decided to start a new blog for my tummy troubles. I'm feeling that same sort of frustration with this new chronic condition that I felt when I started this migraine blog. Basically, I need somewhere to vent, learn and explore how this is impacting my life. So I'm going to post about my migraines here and I'm going to post about my tummy there...

Tuesday, October 20, 2015

Back to Start Again

I'm still at square one with the medication for the gastroparesis. I was supposed to take the Nortriptyline for two weeks and then call the doc to have him increase the dose, which I did. That's when one of his nurses figured out that there was a drug interaction between the Nortriptyline and something else I'm taking, so he had me stop taking the N. Now I'm waiting to hear what he wants to try next.

Meanwhile, I'm dealing with this epic exhaustion that I can't begin to get a handle on. I don't know if it's coming from the tummy stuff or the combination of migraine, sleep apena and the gp. The tummy pain is awful, especially as the day carries on. All my tricks for dealing with my migraines have gone out the window cause they conflict with the gp, so then my migraines feel worse cause I'm not distracting them.

Monday, October 5, 2015

This is so depressing....

I had my follow up appointment with my Gastro Doc. He said he feels that the pancreatitis may have called the gastroparesis, and he has seen this happen before in a few patients. My endoscopy came back normal as well as the biopsies. I do have GERD and Esophatitis. He wants me to take Prilosec for that.

For the gastroparesis, he is prescribing Nortriptyline and diet modification. I had tried Elavil before for my migraines, which gave me bad side effects, so he is starting me out on 10 mg for a couple weeks to see how I do. If this doesn't help, he is going to try Domperidone. That is the one that you have to order from another country.

The diet modification is basically a low fat/low residue type diet, which is going to be tricky cause I'm a vegetarian and I can't tolerate dairy right now. Plus, I'm still losing weight cause I can only take a few bites of food, and then I feel full.

My other problem is the exhaustion. I still haven't been able to use my CPAP cause of the abdominal pain. It's really hard to wear the mask when your stomach is hurting so bad and you're trying get to sleep. I can feel the years being ticked off my life with the double whammy of sleep apnea and gastroparesis.

Sunday, September 20, 2015

Scoping Things Out

I had my endoscopy last Tuesday. The procedure was three hours late, which didn't help my nerves at all, but the actual procedure went fine. The doctor didn't find any obstructions, and he took four biopsies. I should know the results on those in two to four weeks.

He mentioned some possible drugs for the gastroparesis. One is called Reglan, which has horrible side effects, and the other one has to be ordered from out of the country. He said he could write a script for that one. I have a follow up appointment with him in two weeks where we will discuss all this. He said he is still trying to determine where the delayed gastric emptying in coming from. He's not sure if the pancreas is still involved.

I told him that my symptoms are getting far worse. The pain and cramping is so painful and I can only take a few bits of food before I feel completely stuffed. I have never experience this level of exhaustion in my life, and I already have exhaustion from the sleep apnea. My team leader at work said I'm still on a critical level of warning, so my job could be gone any day now.

Friday, August 28, 2015

The End of August

This has been such a long month and so stressful. The results came back from the radioactive scrambled egg test and the solid food portion was abnormal. My doctor says he thinks I have gastroparesis, which means the stomach doesn't function normally. Basically it's paralysis of the muscles of the stomach. I heard this from his nurse over the phone with the results so there wasn't much information. I'm still waiting for the test in September to see if there is an obstruction causing this.

Meanwhile, my symptoms with the pain, cramping and not eating much are getting worse, but I can't take time off work to go see him again or I will lose my job. I really thought I was going to be terminated last week, but I got another stern warning. I don't think it's a question of "IF" I'm going to be a fired, but more of a question of "WHEN."

I'm starting to miss the days when I was just worried about my migraines. They are still going strong, especially now with my allergies. I haven't used my cpap machine in weeks cause of all the congestion. And my ADA claim was denied, but there wasn't enough evidence for an accommodation.

Wednesday, August 12, 2015

August Update

I'm still trying to hang in there, but I've been so depressed that I didn't want to post another "poor me" whine fest. I had the gastric emptying study where I had to eat radioactive eggs to see how the food progressed through my system. I'm still waiting for the results. And my next endoscopy isn't until the middle of September. All my symptoms are still the same with the pain and cramping in my abdomen and I'm continuing to lose weight.

Meanwhile, I'm on a final 30 day written warning at work and I'm pretty sure I will be terminated next week. I did exhaust my fmla time, so now I have to work even when I have a major migraine pain flair up. I've been trying to improve my performance at work, but I can't make enough of a difference because of all my health issues. Yesterday, I had an awful migraine, so I was making all sorts of mistakes. Talk about crash and burning!

Wednesday, July 15, 2015

Will it get any better?

I finally heard back from my new gastro doc. He said my blood work all came back negative, and he wants a few more tests done. I have a gastric emptying study scheduled for August, and he wants to do another endoscopy. The problem is that the first available appointment isn't until Sept 15th. So I have to wait two more months to try to get this resolved.

Because of this additional chronic illness, I've missed too much time at work and my employer has cancelled my FMLA, which means I can't take anymore time off work because of illness. They had to use my existing sick time to try to cover the extra days off, which wasn't enough, so I'm being written up for unexcused time. Also, I had been written up due to a performance issue (because of my health as well). I'm very close to losing my job.

Thursday, July 9, 2015

Waiting for news...

I saw the new gastro doc at the great big university hospital. He said he had to get all my records first and he wanted a bunch more blood work before he would let me know what they are going to do next. So I had everything faxed over there and more blood drawn. I'm still waiting for their phone call. I'm trying not to imagine what they are going to say. It's been officially three months since this whole thing started!

Thursday, June 25, 2015

Nothing is Getting Better

I don't think I've ever had such a blue period in my life with my health. My upper abdomen pain continues with all the symptoms of before with the loss of appetite, food tasting horrible, losing weight, stabbing and cramping pain, malaise, etc... I went to see my primary care doctor to catch her up with what's been going on and she wants me to go to The University of Michigan Hospital, so she did a referral for me. I'm seeing a gastro doctor next week as an urgent patient.

Meanwhile at work, things are going from bad to worse. I'm trying so hard to fix things but everything seems to be working against me. I've never gotten in trouble before because of my performance so I'm taking it really hard. It seems like I'm never going to be able to get my next sleep study done because of all these obstacles. And on top of this, my migraines are acting up big time cause of all the stress.

Monday, June 8, 2015

Another chapter

Last Thursday I had the ERCP procedure where the docs cleaned out some sludge from my bile duct and they made a small incision to help things flow better, but I had a bad pain reaction when I woke up. I ended up in the ER for several hours to manage the pain. They let me go home later that night.

Then Friday night, I had a bad fever, along with severe pain, chills, shaking, and nausea. Saturday morning, I was back in the ER and they admitted me to the hospital for a blood infection called Sepsis. I was in the hospital until Tuesday. They pumped me full of antibiotics and they did several more tests to try to find out where infection was coming from.

Now I'm back home with a big bottle of antibiotics. The docs are hoping that the pain will calm down when everything heals up. I'm still having a lot of the same symptoms with pain and nausea like I did before the procedure. My appetite is still off and I'm living on buttered noddles and toast.

Tomorrow, it will be two months since this whole thing started. I have no idea when I will be able to get my sleep study done, and I'm having major problems at work because I'm not meeting my goals. With the chronic daily migraine and severe sleep apnea, I'm already struggling with the exhaustion, loss of concentration, and memory problems. Now I have these other health problems on top of it.

Sunday, May 24, 2015

another chapter in the ongoing saga....

I had my endoscopic ultrasound and the docs found what they think is a partial blocked bile duct between my pancreas and my gall bladder, which might be causing all the problems. So I have to another procedure with sedation called an ERCP where they are going to try to open the bile duct, etc... The scary thing is that one of the complications is having another possible bout of pancreatitis after the procedure, but they said they will take steps to prevent it.

I'm really hoping that this next procedure gets me on the other side of this whole episode. Everything else seems to be on hold until I can get this cleared up. I still want to get my next sleep study done. I'm trying to do the one day at time type thing right now, cause I feel like I might lose my mind if I don't.

Wednesday, May 6, 2015

My New Malaise Continues

I'm still having the complications from pancreatitis, and I've had to cancel my sleep study appointment, which sets back my trying to help my sleep apnea and migraine problems. My doctor says my CT scan came back normal and I had an endoscopy procedure earlier in the week to look at my digestive tract. That came back normal as well. Now they are going to schedule an endoscopic ultrasound to see the pancreas better.

I'm not sure when you can classify something as another chronic problem, but this has been going on for over a month. And it's not just the pain, but the loss of appetite. I'm never hungry. I can stomach only a couple of foods. Plus there is this horrible malaise feeling, other digestive issues, and constant pain in my upper abdomen.

Tuesday, April 28, 2015

Such a sad state of things....

It feels like I'm down a well and there is no light at the top. Just when my sleep clinic appointment was approaching, I've acquired a new malaise that is throwing me a curve ball. I was hospitalized with pancreatitis a couple weeks ago and it's not getting any better. I had to reschedule my sleep clinic appointment for early May.

My abdominal pain hasn't changed since I left the hospital, and I've lost my appetite to point where I'm living on buttered noodles and toast. The doctors say I have sludge in my gall bladder but they are not sure if that is the cause. Yesterday, I had a CT Scan so hopefully in the next day or two, I will know the results.

Meanwhile, I don't know if I can still keep the upcoming sleep clinic appointment with all this other stuff going on. I'm trying to do that "one day at time" type of thing, but with my tendency to overreact, it's been a battle. On top of this, migraine/sleep apnea thing is going strong, and there are big changes at my job, so I might be down sized.

I am feeling so overwhelmed!

Friday, April 17, 2015

Messy Migraine Mandala

I drew this at 3:00 am one night when I couldn't sleep due to migraine pain.

Monday, April 6, 2015

MarshMallow "My Head is on Fire"

I made a new migraine button on zazzle for myself and I thought I would share it.

Monday, March 30, 2015

The Saga Continues....

My saga continues with the nose surgery and cpap machine. My nose has finally healed enough so I can try to use my cpap machine again, but now the pressure is too much and I can't get to sleep with the mask on. I went back to my sleep apnea doctor and they are going to try to adjust the pressure in my machine down to a four for the next couple of weeks until they can do another sleep study on me to see what is going on in the middle of April.

I'm trying to get my cpap machine back to the medical supply company so they can tweak it, but there was a mix up with the script, so it still hasn't been adjusted. Hopefully, I can get it done this week. Also my employer is questioning my performance at work because they've been changing the metrics of my job and my stats are not up to their expectations, so the migraine/sleep apnea thing is really impacting things right now.

I thought by now that my medical problems might be better so it's so discouraging. I don't want to look at more invasive surgeries down the road. I kept telling myself that if I got through the nose surgery and started using my cpap more, things would be better and it's not happening. What if the next couple of things don't help either???

Thursday, March 19, 2015

Migraine Doodle

I've been working on my own style migraine distraction doodle, where I don't have to think much when I'm trying to draw it, so it just distracts the pain. I'm not sure what to call it. It's like a henna inspired cloud thing.

Monday, March 16, 2015

Migraine Tattoo

I drew my first migraine tattoo design.

Sunday, March 8, 2015

Mandala Pratice

I drew this one during a bad pain flair up while I was trying to work. I think the graph paper helps me keep things more in proportion.

Wednesday, February 11, 2015

Mini Migraine Mandalas

So my sinus surgery went well, but it's taking forever for my nose to heal. It's still too sore to use my cpap mask so my migraines have been acting up big time. I should have known this would happen because I had a tooth extraction last year that took months to heal. This nose thing shouldn't be a big surprise, but it's still frustrating to go through the whole surgery thing and not see any results yet. I keep telling myself to just be patient and hang in there.