I took a nice long break from my blog while I was on vacation in Florida. Mostly because the beginning of the vacation was dealing with head pain and migraines and fatigue that I never got on my computer and the second half of the vacation was spent keeping my little man, Gideon, comfortable because he became sick on Tuesday (the day I finally got medicine that would allow me to have more energy and less head pain, prednisone). All in all we did make lots and lots of fun memories and have so many pictures of course that I am sure we will look back on this vacation with many happy memories.
Then we got home late Sunday night got the car unloaded, unwound and went to bed. Monday I spent the entire day in the ER with Gideon…luckily his fever broke and he is doing much better, but he has been home with me all week. Now it is looking like both boys will be home tomorrow and maybe Friday for a snow day. Guess I am going to have to wait until next week to truly unwind.
The one thing I have to say about vacation with migraine is not as I expected. I think I was expecting to go on vacation and everything would be great…a vacation from migraine because I said so…but it was not so. So “My Family’s New Normal” keeps taking shape. Everything was so much better when I fought to get a script for prednisone though…I was finally able to have the vacation from migraine and life 🙂 It was also very well timed so that I could take care of Gideon as well.
In the days to come I will write a few posts about my vacation and post a few pics! But I am looking forward to having things wind down here at home. Unfortunately with a winter storm comes more head pain. Migraine started as soon as I awoke this morning. Might be a long rest of the week and weekend!
That’s all for now folks!
1/28/16 I HATE IMITREX! The side effects are so awful that I just don’t like to take it. My heart begins to race, my chest tightens, my throat constricts making it t difficult to breath. HOWEVER, it seems to be the drug that actually helps knock down the migraine that occurs over my right eye, the classic migraine that I fight often. I’m not sure how long the good effects last because I am starting to feel it creep back up, but it’s something. BUT DID I TELL YOU THAT I HATE IMITREX. Why does the medication that causes the most terrible side effects have to be the one that may help with the migraine. Ugh! But I am thankful that there are a few options out there now to treat the different types of migraines that I suffer from. Some people don’t even have that, so I shouldn’t be complaining. When I looked up my side effects though, it says to discontinue and to seek immediate medical help because the medication also has the side effect of heart problems that can be masked by the side effects I am having, so I would have no idea if I was in real trouble.
So in the mean time I will take Imitrex if I feel a classic migraine coming on. Prednisone will be reserved for long trips or very important events for the time being and Toradol and Robaxon work well to manage the tension migraines and New Daily persistent Headaches. I feel like I am gaining a little bit of control over this demon, but am a long ways from finding the medication that prevents the migraines/head pain/headaches from happening. One step at a time. I go back to MHNI next Tuesday to work on a new plan of attack. I have ideas and am learning so much about my migraines and patterns through writing this blog, that I feel like I am finally putting the pieces of a puzzle together. And though it is far from complete at least the outside edges are getting closer to being done.
All I know is that because of Imitrex I was able to pick up my son from school when he called saying that his thumb really hurt, run errands and take him to the Dr. in E. Lansing yesterday and this is all after waking with a migraine and not being sure if I would make it out of bed.
I am glad we were able to get in to Josiah’s Dr. yesterday though because the splint they put him in at the Emergency Room was really cutting off the circulation and causing a great deal of swelling even after we had already loosened it. They also determined that the fracture that the ER dr. saw wasn’t really a fracture. But because of the bruising and the areas the hand and thumb are sensitive, they said he likely sprained it pretty bad. We go back in 2 weeks to find out how he is feeling, but for now he loves his new Spiderman boot splint in his favorite color!! It is pretty cool if I might say so myself. He can take it off to take a bath, but for now he keeps it on all the time. When you just look at the splint it looks like any other, but it is actually hard and formed to his hand just like a cast, but this one can be removed. He was happy and the swelling went down rather quickly. So hopefully the pain will go down too 🙂
1/24/16 Sunday was a day of feeling nauseous, feeling groggy and just an overall day of feeling gross. Head pain was dull all day, but that’s because it was overshadowed by everything else. I couldn’t sleep the night before due to feeling so well from the shot of Nubain. So that didn’t help. Trying to get myself re-hydrated and eating again was my main goal of the day. And then to get some sleep. I went to bed at 10:30 pm.
1/25/16 I woke today feeling refreshed was a wonderful way to wake up, since I had woken with severe head pain for the previous week. I had a couple of hours this morning when I felt relatively good, but then fatigue came on quickly so I decided to take a nap. But before my nap I decided to turn the vibrate on my phone off, so that when I have it in silent mode it doesn’t vibrate either. Of all days to do this! I got 4 phone calls that I really should have gotten.
The calls were about Josiah…he had injured his thumb and needed to go the ER. Luckily Dan answered the phone. And then he had the brilliant idea of using “Find my iPhone” which makes a sound no matter what setting you have it on. Which finally woke me up and heading in to the ER to find out what the verdict was on Josiah’s thumb. Broken! My boys…just can’t keep themselves safe!
1/23/16 It only seems fitting that I am back in the ER exactly one year from the day the migraine began. One year of so much craziness, so many Dr visits, so many missed events, so many….
But also I am thankful for new friends, thankful tha I now have an understanding of Chronic illness and living with chronic illness. I am also very thankful for health insurance because even though out of pocket I pay $845 a month and max out of pocket of $3000 at least I didn’t have to pay the hospital/Doctor bills that added up to over $300,000 last year. I am so thankful for the family and friends who have supported my family and myself over the past year.
On my way to the ER after battling a 112hr migraine. I just couldn’t handle the pain anymore and decided it was time to go in.
Waiting for the doctor at the ER. It was one of the best ER visits that I have had in regards to a migraine. She looked back at my chart and saw that Nubain was an effective narcotic for when the migraine cycle couldn’t be broken with Toradol, Benedryl and Robaxon. I also told her that starting an IV was extremely difficult and if I could avoid it, that would be great.
Thankfully she really listened to me and did not insist on starting an IV or taking blood. Instead she offered me a Nubain shot and when that took effect I was able to go home feeling so much better. This is a picture of me after the shot of Nubain, kind of a goofy grin, but that is exactly how I was feeling 🙂
Me waiting for my family because they didn’t get any of my texts. And although I am slightly annoyed I am so thankful for the relief.
Part 1 of my family doctors plan is being carried out right now. Back to the Emergency Room we go. I believe that the Topomax had begun to wear off again and the headache was back and in full force. And since the Dr. recommended that I go to the ER if the headache returns in the same severity, it was off the to ER I went.
All set for the trip in. Bright sun not good for rebound headache at any level.
All checked in to the ER. Going to get another CT, more blood work, an pelvic ultrasound because why not. My period started when I left the hospital on February 19th and hadn’t stopped. So I suppose it’s just a precaution. This was the worst test ever and I am already in so much head pain…did they really need to throw that fun test in.
“Pelvic ultrasound is used by doctors to examine female reproductive organs. This includes the uterus, fallopian tubes, ovaries, cervix, and vagina.”
I have quite the collection of hospital bands, I should make a collage:) (Oh that collection just keeps growing and growing).
By the end of today I have been admitted for the 2nd time in a month. This time I brought a change of underwear, my rice bag (which has already been heated up for me once PTL), ear plugs and my pillow. (I actually keep a bag packed at all times now, just in case, even a year later). I am one room over from my last stay and have already been seen by the same PA and the same night nurse should be here soon. Great staff here on the 8th floor at Sparrow.
I went to work feeling ok…still a mild headache which had remained constant all week. But I didn’t take any medication at all this week.
I did however make great strides in helping out at work. After combing through lots and lots of notes, it truly was back to the beginning we needed to go. So I gathered up what information I had found and went over it with my boss. At 3:00 pm we had a meeting with his boss to discuss our findings. At this point we were all very hopeful that this would solve the problems the facility had been having for the past 7 years. But we wouldn’t know until all the final details were worked out and we actually tried it (for which I would not be there, but on this day I didn’t know that it would be the very last day I worked at this place of employment). The meeting ended at about 4:00 and at approximately 4:15 pm unbelievable pain struck above my right eye. It came on so fast and so hard that I wasn’t sure how I would get home. But I made it and went straight to back to bed.
My first thought was that the spinal headache has returned. Back to bed I go hi ho hi ho. Laying down helped a little bit, but the pain wasn’t completely gone when I laid down, so there was a chance that it wasn’t a spinal headache either. I just didn’t know what to do, but by 10:00 pm the pain was so severe that I decided I needed to go into the ER, but this time I was going to go to Sparrow ER. Now to be done with this bleeping headache (little did I know)!!
The only problem is that the boys are in bed and I can’t drive myself. Social media to my rescue. I asked for a ride to the ER and luckily my dear friend Christina stepped up to the plate. She even stayed with me until 2:00 am. By that point they said I would definitely be there until morning when Dan could come get me unless they were going to admit me…at 2:00 am they still didn’t know what they were going to do. Back in the ER to get a 2nd blood patch (at least I thought this was the problem). Hopefully this will be the last procedure I have in 2015 (If only this were true!)
This was a smile of relief. They gave me morphine!
All tucked in for the night at Sparrow. Looks like I will be here for a little while, likely until Monday when full staff is available for testing. But I am nice and warm, my pain is being managed and it is very peaceful. Counting all my blessings on this very very cold and blustery evening.