When I am feeling well I feel invincible. It’s hard for me to remember when my last flare up was, even if it was a week ago. Its hard to remember I can’t plan camping trips a month out with any definite confidence, or that I probably shouldn’t plan a road trip alone.
The flip side of that is when a flare up hits it hits hard, not just my body, but my confidence and spirit. It whammys my hopes and dreams and self confidence. When its hard to get through a quiet day, then there is no hope for visiting with friends in the evening, or even joining my family for dinner. I can go into a rather morbid depression if I don’t keep my mind busy.
The great thing is, when I am feeling well, I just don’t think about that much. Sure the fear of it creeps up on me all the time, but I can spend my healthy days smiling, and creating, and making big big plans, and getting as much work done as possible so when the illness does hit me hard, I won’t get too far behind.
Today is a good day. I am going to spend the rest of it acting like I have never been ill and will never be ill again. It’s not a bad way to live.
Today was a fairly good day. We worked La Costa Farmer’s Market. No sales which is always rough, especially when we do so much work and drive so far.
I didn’t have a trace of a migraine at all today. I had a moderate amount of achiness. I did have several rather mild episodes of chest/jaw pain. When I say mild I mean it didn’t make me want to cry or scream, but I did long to climb into bed and call a quick end to my day. The chest pain is never truely mild, just tollerable and not so much tollerable.
I also have had acid reflux in the past two days. I am wonder if wheat might be a trigger food for it.
- Anyways, I realized I am a much happier functioning person without a migraine. Once I get the psoriatic arthritis under control I will focus on controlling the migraines, the slipping rib syndrome and the acid reflux. Great news is I found a great chiropractor who will work with me on payments. He feels that if I get my ribs put back every time they go out, eventually they won’t dislocate as easily. He also has some adjustments for acid reflux and says I have some signs of a hernia that could be causing the symptoms. Its possible many of my symptoms may be helped with regular chiropratic visits.
I woke with a migraine, which is an extra bummer because now it will be harder to tell if today’s infusion gives me a migraine. I have an appointment with my doctor before the remicade
Things I need to remember to communicate with my doctor-
Migraines and if I can take migraine meds before the Remicade
Chemical scent directly after meds
Extreme exhaustion in the days after infusion
Crankiness after infusion
Yesterday I said that I had been on Remicade a month, but I am notoriously horrible with math and its been 6 weeks, with my third infusion scheduled for next Tuesday.
Yesterday I struggled still with exhastion but was able to run errands and finish a painting. After dinner, where I over ate a bit, the ribs that had slipped over the weekend started really giving me problems. Its hard to breath, but slipping rib syndrome is something that is unlikely to ever improve and I can’t afford to go to the chiropractor ever time a rib or two gets dislocated. If I had unlimited funds I would go to the chiropractor a few times week, but instead try to limit it to once or twice a month, which tends to be enough to keep me out of the emergency room. Two alleve tempered the pain enough so I could sleep, and two more this morning so I can get through the day. I am helping my grandmother get ready for a big estate sale, so I will just need to communicate that I can not lift things.
Exercise on hold until my ribs are a bit better.
Another day without a migraine, sounds like a great day to me! Also arthritis pain a minimum!
Filed under Chronic Pain, communication, Daily Journal, exercising with illness, exhuastion, Health, Infusions, Migraines, Pain, Psoriatic Arthritis, Remicade, slipping rib syndrome
Yesterday wasn’t so bad. Migraine remained. Which means no result from the iodine yet.
Not for one moment yesterday did my regular pain go above a level yellow and if it wasn’t for the migraine I would have stayed green most the day.
I did get several ice pick headaches, and another this morning. They are called that because its a sudden narrow unbearable shoot of sharp pain going through the head, as if you have been stabbed by an ice pick of course. For me they tend to happen around my ears and come in clusters.
This morning my arthritis is at a level yellow with pain, and so is the migraine. I think its time for me to go get a shot of Toradol for it, which may or may not help, but will make me rather worthless for the day. I won’t be able to today, because of the middle school dance, but maybe I can find someone to take my book fair shift tomorrow. I can at least ask.
A very bad, truly horrible, very good, wonderful day.
I had a migraine. All day. In the morning it was just yellow. I knew I had a meeting to get to right after lunch so I took some migraine aspirin. At 11 it was still there, and I added Alleve and ran to my meeting..an hour early. I came home and lay down for a little while, and almost was late for my actual meeting time. I got through the meeting..smiling even. I have quite an amazing team with PTA this year and they are so accommodating to other members and so respectful I am constantly inspired. By the time I walked in the door was miserable. Sent my husband to the pharmacy to pick up Maxalt. Sometimes my migraines are so bad I vomit and sometimes that feels like it relieves so pressure. Yesterday it just made the pain worse. I took the Maxalt, which is wonderful because it devolves under your tongue and you get it in your system right away which means your body can’t refuse it either.
Two hours later I am back at school for an association meeting. I probably shouldn’t have driven myself there. I was definitely in the red. Maxalt still hasn’t kicked in at all. I stopped and got Mc Donalds, both for the extra double size of ice tea caffeine and for my comfort food, french fries. I get to my meeting only to realize I don’t have my agenda. There are important things to cover and winging it without a migraine is bad enough. Amazingly we did it. The team I work with is just incredible. Everyone did their part and I think we pulled off the meeting only forgetting about one important thing. Then membership table and book fair. I stayed for both my shifts but there were several other women who stayed for their shifts and then others who not only did their shifts but helped others with theirs so moms could visit classes they may not have been able to. By the end of the night my migraine was calmed to a nice yellow.
The reason it was a great day is, with everything that had to be done I had a great group of women to work with, understanding and supportive and determined. And also I got through a red day when I absolutely had to leave the house. I now have a feeling of empowerment. I know now that a red day doesn’t always have to stop me.
Something to consider …I craved fat all night, mc donalds, pizza, cupcakes. I have always assumed when I felt bad I wanted comfort food which for me is buttery foods or deep fried, but I did feel better after eating this foods. I am going to look for a fat/migraine connection. Next time I get a bad migraine I am going to try eating an avocado or coconut oil or some sort of good fat and see if it helps at all.
(A reader reached out to me on face book and sent a thank you to me for writing this blog, I tried to respond but was unable to.)
Thank you. I started writing it for a few reasons, one was that my nurse told me to start keeping a journal, but I am good at starting these things and bad at keeping them up. Doing it publicly held me accountable. But also because I was horrible at communicating with family members and friends about how I felt. And just a little bit because I had trouble finding information on line and I thought I would share the little I had discovered.
What surprised me is how being honest with myself and others is actually helping me live a more fulfilling life. Admitting I have limitations allows me to work around them and with more success than just a few months ago. But what is really amazing is that I have realized how common it is. That so many of us have something we struggle with, and to avoid becoming victims of it and have our lives focus on it, we ignore it. What I have found in writing about it is that a web of support is being built, both going out through me and coming in to me.
(I think it would be awesome to add personal stories to your crafting blog. I would love to follow it as well, so please send me a link.)