Thursday, June 30, 2011

Looking For Some Help

I'm looking for some advice here:

Now that I'm living in St. Louis I need to find a doctor who can help me with this whole Fibromyalgia thing. The physical med doc I saw at Mayo suggested I see an internist but I am quite sure my complicated medical situation is going to require someone with more specific knowledge of Fibro and intractable migraines. The migraine specialist I am seeing at Mayo made it clear that he won't assist in anything that is outside of the migraines.

From everything I've read so far about Fibromyalgia the treatments often overlap with migraine preventatives and associated treatments. Ideally I could find someone who can help with both, or who is at least willing to work with another doc to coordinate my care. It is all so new and I just don't even know where to start.

I thought maybe you ladies who have Fibromyalgia might be able to give me some advice. What kind of doctor should I be looking for (Neuro, physical med, endocrynologist?)? Have any of you found someone who can help with both? Have any of you had a doctor in the st louis area that you liked? If so, who?

Any thoughts, observations, advice or the like would be appreciated.

Wednesday, June 29, 2011

Shutting Down

Today finds me quite without motivation. Life has been so busy for the past 3 or 4 weeks that I honestly don't know how I've been able to keep it up. Likely I've been in survival mode but, of course, one can't keep that up indefinitely. Apparently this afternoon I've finally switched back into normal mode and am really feeling the weight of all the craziness of the move.

I just want to sleep. My whole body is aching and uncomfortable. My brain doesn't want to think about anything. I just want to shut down for a few days and rest.

But I can't.

My mom is going to be coming down for a visit this weekend and there is still so much to do to get ready. I want to have things in better shape when she arrives otherwise I'll be stressing about it. I know she won't care but for some inexplicable reason I feel like it has to be up done...or mostly done. Maybe I'll just go ahead and take the rest of today and tonight off and hope to find the energy and motivation for more work tomorrow.

Tuesday, June 28, 2011

Back Online

It has only been a week and a half since I've had Internet access but it has felt like 2 months. I'm so behind on reading blogs I'm not sure I'll be able to catch up. Plus I haven't posted anything in that time so I'm hoping my wonderful followers have not forgotten all about me.

I knew that this blog meant a lot to me, but I didn't realize just how important it is until I was away from it. Oh how I've missed reading the blogs I follow and writing about what's going on with me. I've missed the support and kindness from you-all.

We've managed to get all our stuff into the new apartment and, after a week, I'm about half done with the cleaning, unpacking and arranging. The first several days we were here I really struggled. This move is a coming home for my husband but it was feeling like just another move to me -  and the stress of that on top of the 2 weeks I spent living out of a suitcase and staying with other people, looking for a place to live and then dealing with the mountain of work in front of me was pretty consuming. But the thing is, it isn't just another move. We have all kinds of support here from both our families and from Scott's friends. Plus, I'm now within an 8 hour drive of my hometown. Fortunately, these facts have begun to sink in and I'm not feeling nearly as stressed as I was.

The unpacking is normally my favorite part of moving as it provides the chance to really reevaluate your stuff. Things that worked in the old place don't work the same way in the new place and so on. I don't know if it has been my state of mind, the new medication I'm taking, or the exhaustion but I'm not enjoying it as I have in the past. However, I am feeling a sense of satisfaction as things slowly come together.

My husband started his new job yesterday and with that our sweet dog, Lucy, has finally begun to relax into her old routine. I think she now realizes this is our home and that everything is okay. She still would rather not be left alone, ever, but she is no longer freaking out when one or both of us leaves.

I really must get back to work here, I just wanted to give a quick update and let you know that I'm back online and my blog will be picking up again.

Friday, June 17, 2011

Change, Change, Change

I've been in St Louis now since Tuesday afternoon looking for a place for us live. After looking at all of our available options I settled on a place that not only is 200 sq ft larger than the next largest place but is also about $150 less than that same place, plus it has washer/dryer hook ups so I won't have to mess with hauling all our laundry for washing. My husband and I were really excited about the place when we saw it advertised but we were certain it was too good to be true. I thought for sure when I arrived it would have a funny smell, or be in a really crummy neighborhood, or it would be too far from the city, whatever...but it appears to just be a good deal.

I say that with hope that we don't move in and find that there is a big downside. Of course, nothing is perfect I just hope we will be comfortable for the next year or so of our lease.

My body is having a rough time through all of this. Between all the driving and hunching over maps and stress, well, you can imagine the aches and pain that have resulted. Now that we have found a place my mind is very focused on all the details of moving. There are always a ton of small details surrounding the business of a move this big and it is about all I can think about right now.

Today my husband picks up the moving truck and the process of the actual move will be under way. I'm feeling a little guilty about not being there to help with the moving and the long drive. My head and my heart are certainly there with them already but honestly, I'm not that much help when it comes to picking up heavy boxes and such. I try to keep reminding myself that if not for my early arrival here we wouldn't be able to drive the moving truck right to our new apartment and be home right away. And that will feel great!

I'm sorry I haven't been keeping up with my blogging. Within the next week or two we should have our computer and Internet access all hooked up, running and things will return to normal. Can't wait to get caught up with you, my blogging friends.

Monday, June 13, 2011

Preparing For The Next Step

Today is likely to be my last full day in Rochester. Unless my insurance comes through with Botox approval, which seems  pretty unlikely right now. Tomorrow I'll drive down to my in-laws house just outside of St. Louis and there I will be.

My body is tired but I've been trying to rest and relax as much as possible this weekend in preparation for what will be a busy couple weeks ahead. I'll spend most of this week exploring the new city and looking for a place to live. My husband, dog and all our stuff will be arriving next week and then we still have the final leg of the move ahead of us.

I can feel myself getting increasingly anxious about everything; staying with my in-laws without my husband, entering week 2 living out of a suitcase with no idea of when I'll feel like I'm at home, trying to balance my health needs with the many tasks ahead and the obligations of visiting people... My stomach has been knotting up and such so I've been trying not to spend much time thinking about anything further out than whatever task is immediately at hand. It's hard to know exactly how effective that has been but it feels necessary and I think I'm benefiting from it.

On a slightly different note, I'm looking forward to being back on my own computer again so I can start posting pictures with my blog posts. Sorry for the lack of them lately!

Saturday, June 11, 2011

Exhausted and Excited

I'm exhausted from the past week. I've had to be up, showered, dressed and out early every day for the past 6 days between traveling, appointments and plans with friends and family. Today should be less physically demanding, thankfully, but there is still so much to be done.

Despite myself I've been spending a fair amount of time thinking about my new diagnosis. I guess it's only natural but I really don't want to be side tracked right now when there is so much moving stuff to do. I have so many questions that are insisting they hang out in my head until they get addressed but they can't be answered right now. Not because I'm in the middle of a stressful cross-country move but because they are complicated questions and I need both time and assistance in figuring out the answers.

I'm starting to see the end of the tunnel regarding the move. More and more it is feeling real and I'm starting to imagine what it will be like to live in St Louis. I can't wait to find out where we'll live and what our lives will be like. It sort of feels like a fresh start, full of possibilities.

Friday, June 10, 2011

Another Place Bites the Dust

After yesterday's new diagnosis of Fibromyalgia I decided to cheer myself up with a trip to my favorite antique mall in Rochester. It is a huge space in the basement of one of the really old buildings downtown and has been a place of comfort for me since I was in high school. Not so big that I can't make it through in a morning or afternoon but big enough that there was always cool stuff to go through and treasures were always found.

I felt like a little time there going to do me some good so you can imagine my disappointment when I discovered that it had been closed. There is no way to know how long ago it closed down as my family and friends were not regulars. Sigh.

I guess that's that. Hopefully I'll be able to find a nice antique mall in the St. Louis area once we have moved and settled in. But it still makes me sad that this particular place of comfort and enjoyment from my life is now gone.

Thursday, June 9, 2011

And Now Fibromyalgia

Today's visit with physical medicine took a rather unexpected turn. The doc I saw did a lengthy history and review of all the testings I've had done over the past several years since my migraines got out of control and, of course, a physical exam. Then she asked if any doctor had ever talked with me about Fibromyalgia before. It has never been suggested by anyone I've seen but my pain situation has certainly been changing over the past year and so perhaps it wasn't until now that someone took a wide look at what's going on and had enough pieces to the puzzle.

She was convinced after her exam and history that I also have Fibromyalgia now.

This is new.

I guess for now I'm just going to sit with the new diagnosis and as time permits I'll start doing research about it. The physical med doc I saw recommended that I go through their 3 day fibro clinic to learn more about it and learn about how it is effecting me and how to manage it better. They don't have an opening until July so I'll come back later and do that.

Honestly, I'm just a little overwhelmed right now. I was overwhelmed before this news with all the moving and such, but now. Well I don't quite know what to think.

Wednesday, June 8, 2011

Back At Mayo

I had my appointment this morning at Mayo. It went well. The plan we developed is something I can get behind unfortunately it isn't over. He said that he is seeing more and more insurance companies authorizing Botox, there seemed to be some trouble determining if it was going to be covered now or not. So I called when I left his office and learned that they will cover it as long as I have prior authorization and meet their medical policy's definition for chronic migraines. I read the policy and it is clear that I meet the definition, now it is just a matter of having the paperwork filled out correctly.

He does Botox twice a week and tomorrow is one of those days. Clearly the authorization can't be done in that time so I'll have to wait. If the authorization comes together in a timely manner I can have it done next week before I leave for St. Louis. Otherwise I'll have to come back in a month or so. My fingers are seriously crossed that I can have it done while I'm still here.

He is also sending me back to physical medicine to talk about the muscle relaxer I am on and the lack of progress I experienced when I had PT. And we tweaked some of the other meds that I'm on.

All in all, it was productive. Things are still up in the air as far as how long I'll need to stick around but it will come together when it comes together.

Monday, June 6, 2011

In Rochester

After two very long days on the road I've arrived in Rochester, sweet Rochester. Thankfully I was able to make it in two days, leaving me all day tomorrow to just rest and get settled before my appointment at Mayo on Wednesday.

I wish I was here under less stressful circumstances but I'm glad to be here anyway. I do so love being in Rochester, being so close to my family and's great for the soul.

I'm staying at my sister's house and she lives kiddy corner from one of my friends. Since I've been driving the same car for about 9 years so my presence has already been discovered and plans have already been made. I'll have to spend some time tomorrow letting folks know I'm here so I can get in as many visits as possible before I have to head down to St. Louis. I didn't have the energy to let people know I was coming in advance.

I don't think I'm actually going anywhere with this mind is sort of wandering and rambling. Perhaps now is the time to wrap it up until tomorrow.

Thursday, June 2, 2011

We Got This

I have been so blessed by a calm that has swept over me in the last 24 hours. After being so stressed about everything that is coming out of nowhere, for no apparent reason, I'm feeling like it is all quite manageable. It's like somewhere inside the old me, who has stage managed and directed plays, planned fundraisers and worked as a social worker took over and analyzed the task ahead and said "no problem, here's what we do..."

I scheduled a planning meeting with my husband last night and we worked out a good plan and set a timeline and such. It even appears that this helped him to feel better about everything. Good progress is being made on the packing and organizing front and I feel like I can make my goal before leaving on Monday. The rest my husband will have 2 weeks of evening and 1 weekend of packing/cleaning time. That should be plenty of time for him to finish.

Everything else we'll handle as it comes up. After all we are two reasonably intelligent adults who have moved many times in our lives. We got this.