Back At Home

Gosh, I've been off the grid for about a week now. I'm sorry it has been so long ladies! My last weekend in Rochester was a busy one, followed by 4 days on the road back home. I first drove down to St. Louis to visit with some more family before heading back to Virginia, which is why it took so long. The drive was pretty uneventful except for being so darn tired. All the activity of the past 3 plus weeks have left me quite tired.

Much to my relief and excitement I arrived home yesterday afternoon. My husband and dog gave me a wonderful homecoming greeting. It wasn't long before the dog forgot that I was ever gone and everything went back to normal. How I wish I could learn to live in the present the way our dog does. After a good night sleep I'm also feeling like things are about back to normal. Although there is still some unpacking and other loose ends to tie up before things are totally back to normal.

I made the mistake of opening all the mail Mayo had sent me. You can imagine what it was - that's right statements and bills. My insurance should be covering most if not all of the bills, but glancing at the itemized statement I was angered and worried by some of what I saw. Panic started to set in so I put them all in a folder and am doing everything I can to not think about it until my insurance sends me their confirmation on paid bills. I just don't have the energy to argue over money right now.

Outside of my pain situation, money is my number one stressor. I worry because I'm not able to contribute to our finances so things are pretty tight. While I was away my husband got pretty sick and made a trip to the ER. The day prior he found some rather larger lumps on our dog and took her into the vet. Thankfully they're both okay. This is however a big unexpected expense on top of the expected additional expenses related to my trip. I don't really have any evidence that my insurance won't cover the medical expenses, but I am very stressed about it (thank you medications). Okay, that's it. I'm not going to talk about it anymore until I hear from the insurance company.

I'm happy to be home. And I'm happy to be returning to my regular routine of blogging and reading blogs. Thanks for all your patience this month! You ladies are wonderful!

7th and Final Day

Today was my 7th and final day of appointments at Mayo. I saw a doc in the women's clinic in the morning. She and I talked about several things and while she didn't really have anything by way of answers she did have lots of good and interesting information. What stuck out most in my mind is that progesterone acts as a natural muscle relaxant. Apparently we have a high level of it from when we ovulate until we get our period. This keeps the muscles, specifically the uterus (but it effects all the muscles), relaxed so the egg will have a better chance at implantation. This is significant to me because I am having a real struggle with all my muscles, especially overnight. Likely, this is why I have fewer migraines during that time. I was relieved to have someone agree with me that I don't have menstrual migraines. It seems like the second a doctor hears that my cycles have an effect on my migraines they say, "oh you have menstrual migraines." And proceed to dismiss the issue. My thinking has always been that menstrual migraines occur around the time that you menstruate. I have them almost continually from the time I menstruate until I ovulate again so that tells me that whatever hormones are at play during ovulation and immediately following actually help my migraines. That's almost exactly what she said.

Then I had my final follow up with the headache clinic doc basically to review and tie up loose ends. My trip here as a whole was worthwhile. I got some good information, a referral for PT that sounds promising, I got to see my great friends and family and enjoy the fabulous city of Rochester, MN. I'm beyond frustrated that the catalyst issue has not been addressed by anyone, but you've probably heard enough about that by now. I know I have.

I've been away from home for 17 days now and boy do I miss my husband and dog. We've never been apart for so long. I'm not headed home quite yet though. As luck would have it a friend of mine is getting married tomorrow so I'm going to stay through the weekend and leave on Monday. It will be Thursday afternoon before I'm finally reunited with my family.

Day 6

Day 6 had me at physical medicine and rehab. All things considered it went well. He pulled up my neck MRI and he was able to tell me that the reason my neck bones are straight instead of in a curve is because of muscle spasms. He was also able to tell me that pain and tingling in the hands and arms can also come as a result of muscle spasms. He is pretty sure that with some physical therapy, education and exercises I can improve the neck pain and spasm episodes.

Obviously I won't be getting the prescribed physical therapy from Mayo so he was able to at least provide some directions for finding a good physical therapist out in Virginia. Sounds like it will still be a bit of a hunt initially.

I'm relieved to have a plan of action for at least one of the issues involved in my pain story. Feels like so much of my time here has been centered around the lack of timely access to a jaw specialist. For that reason today felt more productive than the others.

I also had a short conversation with him about THE doc who I can't see about my jaw. He basically said the same annoying thing that everyone else has - "oh yeah, he's the guy."

Good Day With Friends

With my appointments likely coming to a close at the end of the week I've stepped up the plans with friends to make sure I get to see everyone before I leave. Despite waking up with a terrible migraine again this morning I was able to get it together enough to keep all my plans. I had lunch with a girlfriend from college, followed by tea with another girlfriend from college, followed by dinner with my mom and a family friend at one of my favorite restaurants.

I think the endorphins from the excitement of seeing my wonderful friends sustained me through all the activity. The head pain is creeping back now, but I'm so thankful for all the visiting I was able to do today.

Tomorrow - back to Mayo.

Day 5

Today was day 5 of my Mayo appointments, otherwise known as a big old waste of time. I was to see the psychologist because I didn't score well on the depression screen. Come on , of course- like someone dealing with the kind of chronic pain issues I am wouldn't be dealing with some depression. Honestly, some of those questions really don't reflect my mental state as much as they do my physical state. For example I have trouble getting out of bed some days - yes, because I'm in pain. I don't know that it was necessary to have this consultation. But I wanted to go through with it to A, to be compliant and B, reassure the headache specialist that the pain was the cause and not the result of the depression.

No doubt I'm struggling with some depression and could really benefit from counseling to help me deal with all the crap that accompanies my pain issues. My awareness of this is high and I'm always working to combat it. If not for the separate, yet equally high, deductable my insurance has imposed on mental health services (in addition to the physical health services) I would already be receiving such care.

So I showed up for my appointment and it didn't take long for him to say, "Sounds like we need to resolve the pain you are experiencing to get you back on track." Yep.

On my way out I stopped by the desk where this oral facial pain doc is located to see if I could get a range of time to expect to hear from them, and then to actually see him. I was able to learn that there are more than 300 people on the waiting list ahead of me and that it would probably be 3 to 6 months before I received a call and up to 6 months after that when I could see the doc.

I called my neurologist in Virginia to let her know the situation here and see if she had any advice. She didn't really know what to say...but told me she had a patient there once who came up with an idea on her own and just waited in that department until a cancellation occurred. I read between the lines and decided she was suggesting that I go to the maxillofacial surgery desk and and hang out- wait for an appointment (like a checker).

I don't know. I'm feeling crestfallen and am quickly losing steam on this issue. Maybe that's just a couple bad pain days talking, or me just wanting to get back to my husband and dog. I really could go and spend 1/2 a day or two waiting...see what happens. I've come all this way.

Gap Body Blues

I took a quick trip up to the Mall of America this afternoon. I've been wanting to get a couple things and since there is no tax on clothing in Minnesota this was the perfect time. Specifically I wanted to go to the Gap Body for some underwear and bras. Their bras fit me better than any other I've ever tried. Despite the prevalence of Gaps across the country the Gap Body stores are harder to come by.

I popped in a few of my favorite stores like H&M, Old Navy, Saphora, and then it was on to the Gap and Gap Body. The Gap was right where I remembered it, but the Gap Body that used to be right next door is now a Gap Kids. Apparently they are working on a big renovation project and so everything has been downsized and crammed into this one small store. The only Gap Body presence was a small table of underwear until October when the renovations are set to be complete.

Silly as it may sound, I'm pretty bummed about this. There are a couple Gap Body stores within an hour of our apartment back home, but they are REALLY hard to get to and you have to pay to park and taxes of course.

This trip was not a total loss as I was able to find a couple other things I wanted to get. Between the loud music, mall air, bright lights and crowds I managed to get a pretty intense migraine.

I don't know that I really have much of a point here. The migraine fog has been with me most of the day and I guess I just wanted to do a post about something other than my Mayo appointments before they pick up again tomorrow.

Day 4

Okay, so day 4 was actually yesterday but I met with my sister after my appointment and we ended up hanging out until after 10pm. By the time I was back at my mom's I just didn't have the energy to post :)

I met yesterday with the Internal Medicine doc. and we talked about how things had gone at the headache clinic the previous afternoon. I told him about my concerns with the lack of appointment with this oral facial pain specialist and asked for some guidance. He basically had the same stance as the other doc had - that this is the guy with the experience and knowledge to help me. Suddenly I felt unsure about how hard I should be pushing here while avoiding getting some kind of a label that will only make getting help more difficult. He wasn't really able to give me any guidance beyond letting me know that he's had other patients who have just come back a second time to see him. So I just let it go so we could move on. I'll contact my home neurologist on Monday and just let her know the situation and see if she has any suggestions. I just don't want to go home without addressing my known jaw issues with someone.

My blood is all normal. Expected.

My nerve study was normal. This was unexpected. I have all kinds of aching and tingling in my hands and lower arms; I just assumed that was the problem. And the physical exam was positive...The internist didn't really have an answer to what is going on there. One of my wonderful followers, Selena, suggested that some of my symptoms sound like Thoracic Outlet Syndrome. I did some checking on Mayo's site and these symptoms could very well be something like that. I'll bring it up with the Physical Medicine doc I see this week. Thanks Selena!

Hey, aren't these the kinds of suggestions that the internist should have come up with?

He didn't really see a role for himself as things move forward with the appointments the neurologist recommended so he let me know that he would be sending copies of everything to my home when it was all said and done. And that was that.

Now I'm just looking forward to having a nice weekend before another long week of appointments. Do you ladies have anything planned for the weekend?

Day 3

I finally got to see the headache specialist today, and actually two of them. The second one was new to Mayo and was being shown the Mayo way. That's great - two heads are better than one! I really liked the docs. The male doc was the one I was scheduled to see and while he had a tough time keeping my confusing details straight he was punctual, spent more than an hour with me, took a lot of notes, asked a lot of questions and did a good exam. The female doc, the new one, was very pregnant and provided a good balance. She seemed to hear things he didn't, like about our efforts to have a baby. A good team - I'm very lucky.

He came to the correct conclusion, which is that my pain is complicated and this is not just migraines so he is sending me to other specialists. I'll see physical medicine for my neck, the women's clinic for hormones, and he wanted me to see THE oral facial pain specialist. That's right, there is just the one. Patients do not get appointments with this guy. Instead doctors make referrals and patients get added to a waiting list where they are triaged by someone in his office. Then, someday, his office will call with an appointment. It could be next week, it could be 5 years from now.

So I had to ask, "If I'm not able to get an appointment what's plan B?" His answer, "There is no plan B. He's the guy." Come on, I have no problem seeing an oral facial pain specialist instead of a maxofacial surgeon, but I don't want to wait indefinitely. Especially since I know a maxofacial surgeon will be able to read my MRI and interpret the results and deal with the issue. Can't we at least do that while we wait endlessly for this other guy? He was not budging though. He says that it could be muscular or it could be the joint and this specialist will be able to deal with either, whereas the maxofacial guy is more skeletal.

On the one had I respect that he is not willing to change his educated medical opinion on what I need. And I agree checking on the muscles is a smart move - I could very well have an issue there. However the MRI is pretty clear that there is a skeletal problem. I don't mean to fixate on this issue but it could very well be a cause of my migraines and I just don't want my time here to pass without dealing with it.

I didn't push too hard as it was clear his mind was made up. Tomorrow I'll see the internist again and can have a conversation with him about it.

Headache Blog Carnival

Hey folks, the latest Headache Blog Carnival is available HERE.

This month's topic is Enjoying The Summer When Heat Triggers Your Migraines.

Day 2

Day 2: I was up bright and early ready to spend the day waiting. By 7:15 am a migraine was quickly taking hold and I realized I had forgotten my rescue medications. ARG! I sat there watching the clock, looking pretty pathetic and miserable (which I was). After 3 hours I was called up to the desk and informed that there was a cancellation for Thursday - would I like to have that appointment. Um, let me think, YES!

I don't know if they took pity on me sitting out there clearly in pain, or if it was just very good luck but I am SO HAPPY that I no longer have to sit in that waiting room! I went back to my mom's house, had some food, took my meds and slept for a few hours.

Back on track I'm feeling pretty relieved. Now maybe I can do something fun tomorrow before my appointments pick up again on Thursday. Yes, some fun would do me good about now.

Day 1

Day 1 started early, which is okay with me because having the first appointment of the day is the only way to ensure you don't have to wait long. The poor internal medicine resident who was assigned to my case did a pretty good job. He took his time, he asked lots of great questions, did a logical exam and decided he wanted blood (I called that one-they always, always want blood) and he wanted a nerve study in my arms and he wanted to send me to the neurology dept headache clinic. I got the blood and nerve study done but the first appointment in headache clinic wasn't until late September!

SO the plan is for me to be what they call a checker, which means I show up at the neurology desk and sit there waiting for someone to cancel or not show up for their appointment. The checker hours are from 7am to 11am and then again from 1pm to 4pm. The trick is to be the first checker at both 7am and 1pm so the first no show/cancelled appointment goes to you. But of course you could spend the next month as a checker and never actually see a doctor.

Now, I spent 20+ years living in Rochester and getting all my medical care from Mayo and so it has never been a problem to wait for appointments. I always assumed, since so many of the patients come from out of state or other countries, that some system was in place for those who were traveling and paying money just to be in town, to get appointments in a timely manner. That is after all why we go. If the only system in place is to have visitors become checkers who spend their days (sick as they are) sitting in a lobby waiting for something that may never happen, well that is just crazy.

I spent the last 1/2 hour of the day as a checker and was at least able to learn that I need to be better prepared to sit in that waiting room all day. It was brighter and louder than any neurological waiting room should be. I can't believe how chatty everyone was. I'll be packing snacks, water, rescue medications, noise canceling headphones to create quiet, my hat to block the lights and the 3 questionnaire packets I received today.

Tomorrow promises to be a very long day - It just feels like such a waste of time. What's the point of seeing someone in internal medicine if he isn't going to send me to all the specialists I need to see? He wants neuro to do it, which would be fine if I could actually see them. I think I'll try to get a message to the internist and see if he can pull some strings and get me an actual appointment, or at least start sending me to other people. I don't mind staying here as long as it takes but I want to be making progress, not paying to park and eat downtown while waiting indefinitely to see someone who will make referrals.

Why does everything in medicine have to be so darn hard!

Team Migrainista

Team Migrainista is of modest size today.

-I have the one outstanding neurologist

-My wonderful husband

-My very supportive mom

-Friends who usually have to root for me from a distance since I live so far away. Thank you Internet for helping us stay connected!

Thanks to these amazing folks my team will start growing tomorrow morning when I have my first appointment at Mayo. I'm excited to finally have a multidisciplinary team of professionals working together on my issues. I don't yet know who all will be joining my team. But I can't wait to meet them.

What A Treasure!

Last night I got the chance to have dinner and hang out with some old friends of mine. It had been about 4 years since we've seen one another, which means this is also the first time since the chronic pain took over my life. I have to admit that I was actually a bit nervous about how it would go. Some days I never really pull out of the migraine fog and funk even after the medications have provided some relief from the pain.

I was feeling conflicted. Part of me didn't want them to see the horrible effects the last few years has on me. I didn't want them to see me as sick or frail. I wanted them to see me - their old friend. But another part of me wanted to share what was going on. They obviously already knew that I was really struggling with frequent migraines and that I had had surgery and, of course, that I had come to Rochester to do the Mayo thing. But none of my friends here have actually experienced the altered, medicated me and I don't expect they know the extent this has affected my life.

What ended up happening could not have been better. I knew I couldn't hide all of what has been going on and I decided I didn't really want to. They are dear old friends and as soon as I saw them I knew (or I remembered) that they could be trusted with my truth because they know and love the whole me. That's just the kind of people they are - even after years apart. So I shared. And when I struggled with my words they didn't look at me differently, and when I apologized for my struggles they said "no need." There was nothing awkward, uncomfortable, or different about our interactions. And then thing is, during the time we spent together, I felt like the old me.

What a wonderful feeling.

I don't know what I was so nervous about. The pressure has been lifted and now I'm just excited to get out there and see more friends. What a treasure! I only wish I lived closer and could have this feeling more often.

Surviving Summer

Summer presents a number of challenges for me since the onset of my chronic pain. The heat and humidity can trigger a pounding sensation that quickly leads to a migraine. Plus, my photosensitivity makes all the sunshine painful. These summer traits simply can't be avoided because the dog still needs to go out, I still have errands to run and doctor appointments to get to. Besides, no matter how much I feel like hiding some days, I want to keep living. I want to still be able to do things with my husband, hang out with friends and attend functions.

In order to have some semblance of a life during these difficult summer months I've had to find ways to manage and balance my pain issues with the activities of summer. Of course sunglasses are a must year round, even on cloudy days. Wearing a not-too-tight hat is great for blocking some of the direct sun from hitting the eyes. I've found the trick is to pick the things you want to do most and then plan time before and after to prepare and recover from these activities.

Often my preparations include:

-Drinking plenty of water and taking enough with me to stay hydrated

-Being well rested

-Pack all the pills I could maybe need if things don't go well

-Set no expectation beyond go out, relax and have some fun as long as you can

My recovery usually includes:

-Lots and lots of rest

-Medications

-Continued hydration

I've found that even if I do nothing all month I'll have just as many migraines. If I'm going to get a migraine anyway, I want to get it having fun. I've also found that fun is much easier had when I allow for all the prep and recovery. That way I can just relax and enjoy, knowing I'm ready for anything.

From Rochester

Last night I arrived in beautiful Rochester, safe and sound. Despite the spasm in my neck, and the pain running up and down both arms/hands I was thrilled to be back in the city I love. The trip was pretty much what I expected. Two very long days, each capped off with a migraine. My body is still a bit stiff and the spasm is still working itself out.

The only surprise was how expensive the tolls were. It's been quite a few years since I've driven on toll roads but from what I remember you drove through and tossed 35 or 40 cents into a big funnel basket every so often. I was sure the price had gone up so I packed a few plastic bags full of nickles, dimes and quarters so I would be ready. I had seriously underestimated the rate hike. By the time I was in Wisconsin and past all the toll roads I was $35 lighter.

Now that I'm here my head is full of things I want to do, people I want to see...I hardly know what to do first. The weather is gorgeous and so far today is migraine free. I'm now connected again and ready to return to regular blogging. Is it weird that I missed it so much over the past week?

How was your week? Did you have a good holiday?

Happy 4th of July!

I'm a big fan of long holiday weekends in general. This one happens to feels extra special because my husband will have Saturday, Sunday and Monday off, which rarely happens with his job. I'll be leaving before the crack of dawn on Tuesday so I'm very thankful for these 3 days we'll have together. We don't have any big plans - no picnics, fireworks or trips to the beach - but I'm excited about it anyway.

It has just started to really sink in for both of us that we won't see each other for at least 3 weeks. A lump has already started to form in my throat. I will miss him so much!

This is kind of an interesting holiday for people living with chronic illness or pain; all kinds of outdoor activities, loud fireworks, crowds, etc. What kind of plans do you wonderful ladies have for the holiday? Are you able to make it through fireworks?

May you have a safe and enjoyable 4th of July!!