I was told that it would take at least more than once to apply for social security disability insurance, so when I received the letter awarding me SSDI today, I was so very grateful. I still have long term disability that will run through December of this year (at least the balance of what I was already getting minus SSDI). Very relieved and I won’t have to submit anymore paper work until December for review. So for that it was a good day!
On the flip side, the migraine side, the daily life side; my New Daily Persistent Headaches have been really bad lately and very persistent. So much so that walking through a store, using a computer, watching TV, talking or driving are major triggers. And when the NDPH are bad, the worse the triggers cause an increase the head pain. The constant pain in turn makes me very tired, so I sleep a lot (16 hours a day). I think the meds I am on are also contributing, but the constant pain also contributes. So the only reason I am writing a blog post is because I did a Toradol shot.
In addition tonight I had an allergic reaction to something in the house, something I ate??? I don’t really know what caused it this time and it was the itchy eye, congestion type of allergic reaction. I took a Zyrtec, in addition to the Toradol and put a cold pack on my eyes. Great combo 😛 But starting to feel better now.
Starting with the positives. The neurologist did the nerve block again and again with success. And although temporary it means that I not only have some headache free days over the next week as along as I don’t push it, but it also means that I am a good candidate for the radio frequency nerve ablation, where they basically kill the nerve that is giving me such terrible headaches. I meet with the Pain Specialist next Monday for a consult and will hopefully get that scheduled, however they are scheduling 6-8 weeks out. This will be a more permanent solution whereas the nerve blocks at most last a week.
They are also checking with my insurance company about Botox injections to see if they are covered. The neurologist is hoping that ablation in combination with the Botox and medication (of which I am now only on one called Lyrica) should treat all three headaches that I have going on at any given time.
The physical therapist also gave me a script for a tens unit to help between now and when all of the above have been completed and take affect. I am also going to physical therapy and for the first time in a long time the majority of the tension in my neck is relieved. So that is wonderful.
My next apt with the neurologist is June 10th and so my return to work date is June 10th. My FMLA runs out May 25th, so I am not sure what that will mean for my job. Trying pretty hard to put this all in God’s hands because it is truly out of my control. I really would hate to lose that job, it was one of the best jobs I have had and it was such a great company to work for, but at this point there is no way I could possibly work. When all 3 headaches decide to be present I am down for about 3 days, in bed all day. And although I am learning some of the triggers and can try to avoid them, talking is one of my biggest triggers as well as bending over or looking down, chin to chest. I have also found that using my arms out in front of me quite quickly brings on at least one of the headaches.
So again I say this is all in God’s hands at this point and I have to rely fully on him.
Sherry Dunne Weaver, Aunt Merry Dunne Blades, and Teresa Blades Jagielski, you guys will get a kick out of this.
Last night at dinner Gideon looked over at me and said “you are shaking just like Grandma” and then he demonstrated by shaking his spoon as he took his next bite. Unbelievable that a 4 year old would notice that. I’ve always had slight tremors called familial tremors but my meds have intensified them so that even if I am standing in one place to long my butt shakes :).
Familial tremor is an involuntary shaking movement that tends to run in families. Involuntary means you shake without trying to do so.
Saturday May 2nd: In bed all day, completely non-functional with a tension headache that returned along with the pain in my forehead (mostly between my eyes). I had to take Toradol shot today and it did give me some relief, but not very functional
Sunday May 3rd: Same as Sat. I was in bed all day and completely non-functional. I also did a Toradol shot and used the spray for some fast relief to have dinner with the family.
Monday May 4th: The head pain finally let up a bit, the pain was back to my baseline of 3…so I decided to do some computer work (trying to get the house listed). But the computer is a main trigger for migraines and my head pain increased to a 4 very quickly. So I decided to take a shower to help relieve the pain and then rested for the rest of the night at a baseline of 3.
Update: I have an apt with Michigan head/pain neurological institute (MHNI) tomorrow. They will run a variety of tests and meetings with several drs. By the end of the day they are supposed to come up with a
plan to be seen on an outpatient basis or if they will admit me to the inpatient program. So prayers for God’s guidance and wisdom. Also prayers because it is going to be a long day.
I had a couple of days where I had some relief and while it was wonderful to have the break from the constant awful pain, I had to be in a quiet, dark with minimal stimulation. Last night and today I came out of the dark and started talking more and watching some TV and the full blown headache is back. TV and conversation are big migraine triggers, also light, noise and over stimulation. So prayers that I get some sleep tonight as well. We have to leave at 5am.
They are hoping and planning on admitting me to the inpatient program as long as insurance approves the stay. If they do they are hoping to get me in early next week and plan on a 5-10 day stay. I should know tomorrow afternoon.