Romantic Relationships & Migraines

The topic for February's Migraine and Headache Blog Carnival is:  Romantic Relationships and Migraines - How are they affected? Does anything about living with a chronic condition bring you closer? Is it possible to build a new one?

I've been thinking about how to structure my thoughts on this topic, and I've decided to split it up into two parts. Part one will be about how romantic relationships may be affected by chronic illness. Part two (which I'll post tomorrow) will be about some things about living with a chronic condition that can bring you closer.

A search for the word "romance" in the online dictionary reveals that there are many different definitions of the word. It's no wonder people have so many different ideas about what romance really is! I like one of the first definitions, which defines romance as the "ardent emotional attachment or involvement between people... a state of connectedness between people." Other definitions focus more on the passionate, sexual aspects of a relationship. Not to diminish the importance of these in a marriage; but when one partner has an illness that interferes with those aspects, it's important to find other ways to be intimate with one another as well. Thus, the first part of the definition - connectedness and involvement between one another - become even more important.

My migraines often keep me from wanting to venture outside the walls of the apartment. While most people can't fathom being "stuck" inside for so many days at a time, I don't mind it. I like my apartment, and I have my husband there with me. I only wish that I felt better and could enjoy myself more.

My husband and I have learned to adapt to being in the apartment together all the time (especially since he's still been without a job for a while). We have things that we do on our own, but there are things we do together. We've found that playing games (card games, Yahtzee, etc...) is a great bonding activity. It gives us an opportunity to spend time together and to have fun. We like making s'mores together (with our indoor s'mores maker). We love to laugh together.

I have really learned that it is the "little things" that are so special in life. My husband does most of the chores around the apartment and takes care of me. He finds little ways of surprising me and making me smile each day. Sometimes I look at him, and I just can't help but thank God that I have someone so loving and caring to take such good care of me. I've been able to help more around the apartment, since I got my neurostimulator implanted and have had a chance to recover some. We enjoy cooking a meal together every day or every few days. I try to always remember to cherish the "little moments."

Physical touch is a bit trickier of a subject than finding time to spend with one another. I also deal with Fibromyalgia symptoms, such as chronic widespread pain and sensitivity. This can sometimes make even holding hands or cuddling with each other uncomfortable, sometimes unbearable. But, we always make sure to hug and kiss each other every morning and every night, even if it has to be extra gentle. Always start and end your day with some sign of affection for one another.

Tomorrow, I will continue my discussion...

An Update From Texas

I know I've been away for quite some time. Let's see...

I made it through a HORRENDOUS migraine that lasted a week. I wrote about being in Survival Mode, and that's truly what I was in for what seemed like ages. The pain radiated throughout my entire body... to the point that my migraine pain was a lesser concern. I wanted to rip off my skin, it just hurt so bad. It hurt to move. It hurt to have clothes on, to have a sheet or blanket touch me. I screamed, when my husband took my hand to help me up off of the couch. It was pain like I've never experienced before. My abortive meds didn't help, my neurostimulator didn't seem to help... so I decided that I knew how to live with my migraine pain better than I knew how to live with the intense all-over body pain I was experiencing, so I took some pain meds I had from after my surgery. That didn't really help either, but took enough of the edge off that I could finally get a little sleep. This all started on a Thursday evening, and was at it's worst on a Saturday. I did call my doctor on Monday. He started me on corticosteroids to stop the migraine.

Once the pain lowered some and my brain started working again, I realized how bad things had truly gotten. I should've gone to the ER. My husband and I talked about how we should deal with these kinds of situations in the future because he did ask me multiple times about going to the ER, but my "pain brain" kept telling him "no" (apparently). It's so hard because I'm in pain all the time and then I gradually slide into these horrible migraines, so it's difficult to know when the line has been crossed and I need to go to the hospital. In any case, it finally ended.

I went to my neurologist / headache specialist last week. He's tapering me off of one of my preventives, and tapering me up on my other one. He believes that I have Fibromyalgia, which I've heard from at least 2 of my other doctors. So, no "official" diagnosis, but he's starting me on Lyrica. He also changed my abortive medicine to a narcotic. I'm pretty much out of options to get rid of migraines, once I get them, so I'm hoping that the neurostimulator gets to working.

I had an appointment with my doctor for my neurostimulator a couple days ago. They said that, medically, everything looks great. All of the things that are bugging me (leads in my forehead being visible, connectors sticking out in my back, battery hurting some in my hip, loop in wires making it uncomfortable to wear my glasses, etc...) are all pretty minor things. He said that most of them can be tended to later, if they continue to be a problem (he said it's still pretty soon, and that it sometimes just takes more time for the tissues to get used to having the implant inside). But, he stressed that the major concern he has is that the neurostimulator hasn't had the dramatic impact / decrease in pain that they typically (and hope to) see. I've had the same number of migraine days, but I've been able to do more things overall (like cook, do housework, play games, spend time with family, etc... more). We added back one of the programs that was accidentally deleted (and was one of my favorites), so we'll see how things go now. Still hoping for improvement.

Other than that, my husband and I are just waiting out the ice and snow here in Texas / Oklahoma, so we can head back to our home (he still is without a job, so we're on no real timeline... though we both wish he did have a job). We've enjoyed weather in the 60s and 70s over the first week we were here, but then the temperatures plummeted and the ice and snow came (we only got a couple inches of snow, I think, but it's on top of an inch or so of solid ice). Possibly more snow tomorrow night and Friday. I think it's 16 degrees with a wind chill near 0. I'm used to crazy Texas weather, having been born and raised here. But, I don't remember it ever being quite this cold before. Tulsa got like 14 inches in a day, and it's much colder, so we're sorta stuck here until things melt and clear up. I know there are a lot of areas getting hit with MUCH worse weather. I hope everyone is staying SAFE and WARM.

BLESSINGS!!!

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!