Medications Wreaking Havoc

I realized that I haven't updated on how I'm doing health-wise in almost a month. My last update was after I had been to both of my doctors in Texas - receiving an unofficial diagnosis of Fibromyalgia, and having my neurostimulator adjusted.

Having my neurostimulator adjusted started out great. I didn't have a migraine for a week and a half straight, after I had one of the programs that I had liked during the trial added back (my rep accidentally deleted it before). A week and a half! Since then, though... I've had ups and downs, recently more downs. There are a lot of weather changes and a lot of pollen in the air (Spring is in the air), so that's wreaking havoc with me and my allergies... might be a contributing factor to the worsening of the head pain. Overall, I'm still trying to just be patient with the neurostimulator. I know that it can work, I've experienced it... I just need to wait for my body to finish adjusting to the device, and then work on re-programming it, so that we can maximize on those good days.

On a different note... I've gotten off of one medication, started on Lyrica, and stepped up the dosage on the migraine preventive I've been on since Sept/Oct (Topamax). I was able to come off of the one medicine without problems. But, then things become far more difficult to differentiate between whether they were caused by migraine, fibro (if I even really have it), one of the medications, or something completely different.

Late last week, I began having a lot of problems with dizziness. I had to sit down and rest quite often because I felt weak and unsteady, as though I was rocking back and forth on a boat... actually, I was rocking back and forth (according to my husband). These feelings worsened over the weekend. By Tuesday, I was unable to stand long enough to take a shower (after having been sitting or laying down for most of the previous 96 hours). My legs were so wobbly, shaking so uncontrollably... I was so grateful that my grandmother had given me a shower chair a month or so ago. But needing to use it was one of the most humbling experiences I've ever had. I already don't shower as often because it wears me out so much, but to not even be able to make it through a shower without needing to sit down... Wow.

My migraines have also been super-bad, especially the past week and a half. It's been pretty much non-stop... pain levels getting just enough below migraine to prevent me from taking a trip to the ER. With all of this happening, my world has been spinning around me; but I was able to call my doctor today. I explained the plethora of new symptoms I've been experiencing.

We're going to back down a little on the Lyrica, and see if that helps. I'm going to stop the narcotic pain killer that I've been using as my abortive migraine treatment. My doctor said that he doesn't have anything to replace it with. What the heck?! I know I've tried A LOT of meds, but really? Nothing?! I can't just do nothing! I'm going to re-try some of the abortive meds I've tried before with some relief, and maybe they'll work better in conjunction with the neurostimulator. I'm also going to have blood drawn to check my electrolytes and thyroid levels. (I'm going to set up an appointment to have a physical and blood test to test all kinds of other things, but my headache doctor wants to get these things tested now).

I really want to write. I've been itching to write, and hating that I haven't been. I actually started writing in my paper/pen journal again... after a VERY LONG time of not doing it. I've also been attending a class at church, which has me doing some soul-searching. It's all been hard with my increasing migraines (and with the words looking like they're moving on the paper/screen) and worsening cognitive functioning/processing... perhaps there are a few things there that I can write about in future posts...

"Faith is not a hothouse plant that must be shielded from wind and rain, so delicate that it has to be protected, but is like the sturdy oak which becomes stronger with every wind that blows upon it.  An easy time weakens faith, while strong trials strengthen it." ~ Katherine Workman

Secret Agents in Stupid-Land

Well, I've lived in this apartment for 18 months (my husband has been here with me for 14 months)... and, apparently, we've NEVER had anyone live in the apartment above us... UNTIL 30 days ago... This is where this nightmare begins.

We were out of town for doctor appointments, when these upstairs neighbors moved in. Then, the ice and snow storms came and we weren't able to get back here for another week. So, by the time we got back to our cozy little apartment, our new neighbors had been living above us for 2 weeks. We immediately noticed the noise, but brushed it off for a few days (no need to get crazy if it's just temporary).

The noises didn't stop. They persisted, and even worsened. Actually, it wasn't just the noise that bothered us. Whatever they're doing up there literally shakes our walls (and, subsequently, the things hanging on our walls)... even on the inner-most walls that shouldn't shake at all. The apartment we live in is brand new - we're the first ones to ever live in it. So, it's not that the building is old and rickety.

After being back in town for only 3 or 4 days, we had BOTH had enough! Let me pause right here for a moment. I have migraines, so it's obvious that the noises would bother me. But, my husband is the most laid-back and patient person in the world, so I knew it was really bad when it was ticking him off too. We've spent a lot of time coming up with theories as to what the noises could be. Honestly, if we could figure out a logical explanation for the noises that we could wrap our minds around, we would both be alright... but, no such luck. Part of it is just loud walking, but there are loud dropping / thumping sounds... and they have a little kid... and the noises are all through the apartment, all the time. But, I digress...

So, after being back in own for only 3 or 4 days, we submitted an Excessive Noise Complaint to the apartment office. I'd never done this before. They said they'd put it in their file; and they'd try to resolve the situation, if they received any further complaints (and to let them know if it worsened). So, we're trying to figure out the best way to re-contact the office to deal with the continuing problem.

I've become a DETECTIVE (i.e., Secret Agent) in this because, let's face it, I'm home all day (and so are they). I wanted to find out more about these people that are wreaking havoc on my/our peace and quiet. We noticed 2 vehicles that hadn't been in the parking lot before... a new Escalade and a new Malibu... from New York... each with a "baby on board" sticker on it. New cars. New York. Baby/kid. Home all day.

The other day, it became eerily quiet and then I heard noises going down the stairs, so I ran to the window to see if I could see who lives above us. I realized that I was stalking my neighbors, but I didn't care. There was a mom and 3 little kids, obviously not all her's. It appeared that she had gone outside to sit down and blow bubbles (pretending that she'd had these kids outside during the day before), just in time for their mommies to come and pick them up. Sure enough, 2 cars pulled up, and the kids dispersed. She returned upstairs with her kid, and the noise started again. Nanny/day care. If you nanny children, and it's a beautiful day outside, and there's a playground that's in the apartment complex, there's NO reason to keep them inside. Your apartment is NOT a freaking playground. Now I'm starting to understand the noises. (At least) 3 little kids running amuck, jumping and throwing things... oh my goodness!

Somehow the disabled / unemployed couple (us) that stays home all day got the upstairs neighbors that stay home and nanny toddlers (them) all day at home. I'm so upset with all of this. We had our apartment lease out, which there is a clause about Quiet Enjoyment and Peaceful Possession (and not encroaching on other Tenant's...). I've checked ADA to see if there's any protection there, but there's no protection in private residential apartment complexes.

I love our apartment home, but I'm about ready to throw in the towel because of these fools. I'm going to see if the apartment office can / will do anything (not sure what they can really do). But, I'm also not sure if they want to lose a loyal tenant for some jokers that just moved here and ran us out after living here for less than a month.

I'm sorry for the long rant. It's just been building up over time and it's absolutely ridiculous.

Romantic Relationships & Migraines - Our Story

This post is part two of my thoughts on the topic for February's Migraine and Headache Blog Carnival - Romantic Relationships and Migraines. In part one, I discussed how romantic relationships may be affected by chronic illness. This post will be about some things about living with a chronic condition that can bring you closer.

My HAPPILY-EVER-AFTER began long before my chronic migraines ever began...

My (now) husband and I began dating during the summer before our Senior year in high school (2002). We were both very successful in academics and sports, until we were each injured in our respective sports. We graduated just a few people apart in our high school class, and went to different colleges. Our relationship survived a lot through years of long-distance. I graduated in 2007, and started a full-time job a few weeks later (still long-distance). I was succeeding in my job, I had presented part of my senior thesis at a national conference, and Jeremy had proposed... when BAM! I was in a car accident that would change my/our life forever (October 2008).

I moved back home with my parents for about 10 months, before I moved 5 hours away from my family (8+ hours from my then fiance) to start graduate school. Jeremy and I got married in October 2009. After he completed his degree, he moved in with me and we began our life together (finally in the same place!).

Our relationship has probably never really looked "normal" to most people. We carried on a long-distance relationship for 6+ years, we lived apart for a few months after we got married, we like to do different activities than most couples our age like to do, etc... However, it's changed even more since the onset of the chronic migraines.

Chronic pain changes your world, and the world of those close to you. It's hard. Sometimes it's really hard. But, you just have to keep putting one foot in front of the other.

Our life looks NOTHING like most people imagine the life of NEWLYWEDS. But, that's okay. I have these debilitating migraines (among other things), and we've had to ADAPT. I wish that Jeremy didn't have to be in a care-giver position, but he truly is wonderful at it (I'm still working on being a better care-receiver). We say that we're living out the "for sicker or poorer" parts of the wedding vows right now... HUMOR and LAUGHTER are something that are very important in our relationship. Jeremy has always been able to make me SMILE, which is one of the things I CHERISH so much.

While "outsiders" may not understand why or how we function the way we do as a couple, it works for us. We've had to learn how to COMMUNICATE in different / creative ways, since I cannot always communicate coherently (migraines and meds often make me mumble, slur, and/or unable to find the right words). Jeremy is my best cheerleader - he helps me CELEBRATE my accomplishments, no matter how "small" they are... I'm not good at this, and he's great at helping me.

I know we've only been married 16 months, but we've already been faced with some real life challenges... and our LOVE has GROWN deeper as we've worked through them... we've grown through financial struggles, job losses, illnesses, car accidents... I honestly love him more and more each day. The Lord has truly BLESSED us!

"Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perserveres. Love never fails." ~1 Corinthians 13:4-8a

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!