Process of Diagnosis & What Follows

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Shweta, of It's No More In Your Head, is hosting the January 26th edition of the PFAM blog carnival. This month's topic is about the process of diagnosis and what follows:  what advice you would give to those who have recently been diagnosed with an illness or are going through the process of diagnosis.

My tips to those that are going through the diagnosis process, or who have recently been diagnosed, include:

1. Be your own voice and advocate, as much as you're able. Sometimes this is easeier said than done. The diagnosis process can seem very surreal. But, you know your body the best, so you need to do your best to communicate what you're experiencing clearly to your doctors, etc...
2. Ask questions! Don't settle for something at face value. If you don't understand something or want to know more about something, ASK!
3. Be an informed patient, but try not to get too overwhelmed with all of the available information. Also, don't jump to conclusions and "self-diagnose."
4. Become involved in support group(s), the online patient community (e.g., blogs, chats), friends, and family.
5. Keep a journal / diary. This will help in many different ways. You can use ones that are available online (such as this Migraine Journal), or make one that caters to your individual situation.
• For example, I designed mine in Excel with the following columns:
• Date
• Morning - time I wake up / get up, and then just basic tasks I did (what I did)
• Meds - times and what meds I take (the meds I take on a daily basis aren't written each day... I put a star when I start them, and them take them around the same time each day after that) - this makes it very easy to see when I've taken my abortive meds
• Headache (type, time, etc) - anything specific about this headache
• Intensity (0-5) - intensity level (my doctor uses a 0-5 scale, but I like to use a little different one... example:  3+ means that my day was split between a 3 and 4)
• Neck pain
• Back pain
• Shoulder pain
• Allergies
• Mood (depression, anxiety, stress)
• Cognitive ability (focus, thinking, memory, etc)
• Exercises
• Evening - basic things I did throughout the day, and then the time I go to bed
• I do this for each month (easy to print out and keep in a binder). At the end of each month, I also include the following:
• Changes in medication
• Reactions to medication
• Menstrual cycle
• Weight
• Doctors' appointments
• Major stressors
• Major accomplishments
• This allows me to have a "quick snapshot" of the month that I can easily refer to and see what meds I was taking, what doctors I was seeing, etc...
• I also have a sheet that my doctor gives me that has 3 months on the page - I just write the pain level and abortive meds I take on each day of the month.
• I also compute an average pain level for each month, as well as a count of migraine-level days (4-5 on my doctor's 5-point scale).
6. You're going to experience a lot of different emotions throughout the duration of the illness. However, the dianosis process can be quite turbulant. Allow yourself to go through the stages of grief:  denial, anger, bargaining, depression, acceptance. These stages will most likely not occur in order... you'll probably revisit them many times over time... it truly will be a PROCESS.
7. Everything can seem so confusing and overwhelming, but there's always HOPE!
• REACH UP,
• REACH OUT,
• DON'T GIVE UP!

Survival Mode

I woke up yesterday feeling like I'd been hit by a FREIGHT TRAIN. I told my husband that it was going to be a ROUGH day, and it was. All I did was sit/lay on the couch, trying to watch TV/movies (and eat/drink, since hubby makes sure I keep eating and drinking) to keep my mind off of the pain. It didn't work. Neither did the pain meds. I'd already used my two days of migraine abortive meds for the week, and it was more than my head that was in sooo much pain... my WHOLE body was in a WHIRLWIND of PAIN, including my HEAD. I tried changing the stimulator, but it didn't help. The pain was RELENTLESS and lasted ALL DAY. It took a long time to get to sleep... and to stay asleep...

This morning was similar to yesterday... perhaps just a smaller train... I feel a little better than yesterday, but that's not saying too much. It hurts to even sit up and type... I need to shower, but I'm afraid the water would just feel like millions of tiny knives stabbing my tender skin. I guess I'm going to head back to the couch... I HATE times like these... Simply living in SURVIVAL MODE...

Back in Tulsa

I've returned to my Tulsa apartment with my husband for a couple weeks. It's nice to be in our apartment again. He's been off work since a little before my surgery, so we're hoping that his job starts up again soon... it's getting stressful again, though I'm so grateful that he's been able to be with me through the surgery and recovery process. There's some stuff around the apartment and some paperwork that needs taken care of, but the major focus is on RECOVERY. I'm trying to take it easy. We've been watching movies, playing games, cooking together more, and having indoor s'mores.

The incisions and extension connectors on my back are very tender, the battery in my hip is sore/tender, and my neck range of motion is greatly restricted and painful still. My neck is so stiff, and feeling the wires move around as I move my neck is so... weird! I'm trying heat and neck stretches, but it's difficult. I tried walking on our treadmill for 5 minutes today, and it gave me a headache. My migraines have been much fewer, and I'm eating better than I was before the surgery... I think I'm gaining back part of the weight I lost after the accident and from all the meds... finally!

The 4.5 or 5 hour drive back here to Tulsa the other day (luckily, Jeremy drove the whole way) was BRUTAL for my head and body, so hopefully I'll be doing better in a week and a half when I have to make the trip back down to Texas for more doctors... or at least take some pain meds for the ride.

I've got a few ideas for some upcoming posts... I'm just having to work on things in little pieces. THANK YOU ALL for your care, support, thoughts, and prayers. I really appreciate (and need) it. BLESSINGS!

Expectations and Recovery

Expectations...
Mine or others'?
Pressure from the inside...
and the outside...
I feel lost in my own life,
and I'm scared.
My body is in so much pain,
but my mind and emotions are in just as much turmoil.

Those around me seem to think that this surgery/device is some kind of "magic bullet" that's just going to make all of the pain go away. It's a blessing, yes... but it doesn't (and most likely isn't going to) completely eliminate the pain...

The neurostimulator trial resulted in a 4 or 5 day stretch without any debilitating migraines. I was able to do more, but I still had pain and restrictions/limitations... not to mention, the trial was less than a week long, so you can only tell so much. It is my hope that the permanent device (which I've now had in for 2 weeks) will reduce the pain to a manageable level, but I don't expect it to prevent me from ever having another migraine. That just seems like wishful thinking. If it happens, I would be forever grateful... but I know that it's a long shot.

I find myself trying to balance optimistic and realistic outlooks regarding my health and recovery. I hate the pain, the racing thoughts through my head, the assumptions and expectations of those around me, and the uncertainty of what is to come.

Recovery has been more difficult than I anticipated. I've had a few migraines, even with the device in/on. It scares me to be experiencing those all-too-familiar migraine symptoms that I can definitely tell are not surgical pain. Others just try to tell me:  "the surgery wasn't that long ago" and "the migraines will go away once I heal from the surgery." I just want to scream at them sometimes! Just because I had this implanted, doesn't mean that I'm never going to have a migraine again. Going from daily migraines to never having a migraine is extremely unlikely, to say the least. Then, I get to hear that I just don't have the right attitude or enough faith. I just can't handle it right now! I don't even know...

This post has taken me several days (perhaps a week ... time has kinda gotten away from me) to write. It's been an up and down battle with pain and dealing with the expectations that I have for myself... and that others have for me. For the first time that I can remember, the expectations that others seem to have for my recovery weigh on me more than my own expectations. I've always been much harder on myself than others are on me, so this is a strange feeling. I feel, again, like people just aren't listening! They cherry-pick what they want to hear or believe and ignore all else. They seem to have decided in their heads what this treatment is going to result in, and that is the only thing they will believe... regardless of whether or not it turns out to be true or false. I hate that it doesn't matter what I say to so many people... they're going to believe whatever they feel like believing. It's so frustrating, right now!

Post-Surgery Update

I know that it has been a while since I last posted. THANK YOU to everyone for all of your thoughts and prayers. I really appreciate them, especially during this time.

My surgery went well (12/22/10). It was preceded with many days of migraine pain and continuously increasing anticipation and irritation. The only thing I remember in the operating room was a song that was playing (they had asked what my favorite type of music was - contemporary Christian) - I Can Only Imagine by Mercy Me. It's one of my favorite songs, and it's so fitting...

I Can Only Imagine by Mercy Me

 

My parents and husband were there for my surgery, and then my husband stayed overnight at the hospital with me. We actually slept for a while, and then were up during the wee hours watching a comedian (Nick Swardson - highlight reel below) that was HILARIOUS! The nausea and pain were up and down after the surgery, but the pain hit horrible levels during the middle-of-the-night hours at the hospital. I had pain meds via IV, pills, and a shot in my leg. I was finally able to sleep for a few hours. I was released from the hospital on Thursday morning. 

Nick Swardson - Highlight Reel of "Seriously Who Farted"

(WARNING:  bad language)

I spent most of the first week after surgery resting. I didn't make it to all of the Christmas festivities, but Jeremy and I were able to celebrate together with our immediate families (thank goodness they live close to one another).

The pain has been more than I expected, and was at times UNBEARABLE... something I didn't expect. I think I prevented myself from thinking about how serious and "big" the surgery really was... as a defense mechanism. And, now I'm trying to recover from it.

I have 4 leads (2 in my forehead and 2 in my neck), which are connected to a battery in my right hip. The battery has been extremely sore/tender the past few days. I'm working on range of motion in my neck, and really just getting used to having this thing in my body. I've had a lot of surgical pain, but HUGE reduction in migraine pain.

I'm so thankful that my husband has been able to be here to take care of me. I've needed him A LOT through this. The emotional side of recovery is just as difficult as the physical, so it's a blessing to have him here with me for a while (before he has to head home to return to work).

I'll try to start posting again, once I recover more. It has just been difficult with the pain from the surgery. But, I hope everyone had a wonderful Christmas. And, I hope we all have a better year than the last. BLESSINGS!