My Suport Hoes

I'm sure you're all reading my blog thinking, "Is she going to do something other than complain?" Well, mostly, no. But this is one post that I'm actually not going to complain for a change. (hold your applause)

I have been through so much over the last 6+ months (stating a fact, not complaining so don't call me out on a lie yet), and I could not have gotten through it without the support of my family and a few very special friends.

Without my parents, all 15 of them (okay, only 6), especially my dad and step-mom, Chris, the kids, and I would be living in a van down by the river.

My step-mom has been a wonderful friend and "second mom". She is always there to listen and offer kind words of encouragement. She is always offering to help with things when she can. I know I couldn't do this without her.

My mom, my friend, my shoulder to cry on, has been so wonderful throughout this whole thing. She has been going through so much of her own stuff/stress. But no matter what, she always listens when I call her crying (which is a lot). She used to live about 30 minutes from us and recently moved to a place about 10 minutes from us. I have loved that! She has helped with as many things as she can even with the busy life she leads. She is a huge support both physically and emotionally and I am so grateful for that.

Without my sister, my aunt, and my neighbors Chris would have had to fix dinner a lot more times than he would have liked. I also appreciate the occasional visit or two to keep me sane.

I also have a couple of wonderful friends (yes, Kerri, even though you're my cousin, you're still my friend!!!) who have listened to me bitch and moan a whole hell of a lot. I haven't had a lot of things to talk about other than my illness for awhile and they have put up with it really well. I, personally, would be really freaking sick of it! But that's why they're such great friends and I love them, because they put up with me! So, thank you for putting up with me and please continue to put up with me. Please! Please! Please! Can someone please pass the Fork?

Last, but not least, I am SO thankful for my wonderful husband, Chris. Now, if there's anyone that I couldn't do this without, it's him. He is my rock. He has kept me from going to Two Rivers (the local psych facility for those of you out of towners) many times. He has pushed me into calling this doctor, going to that doctor, or getting such-and-such test. He has waited on me hand and foot, even when I haven't showered in a few days and those feet aren't smelling so nice. He has practically been a single dad (aside from the occasional shout "Danica, stop that" from the couch) since December. He has dealt with my ups and downs.. okay, he's dealt with my downs, lots and lots of downs. I am so thankful that I have such a wonderful husband that is willing to stick with me through all of this. Not all of them do. I love him more than I can say.

Mayonaise

Well, It's official. I'm going back to the Mayo Clinic. I have an appointment August 11th.

When I went to Mayo in late March of this year I saw an Autonomic Nervous System specialist who officially diagnosed me with POTS. She sent me home with a treatment plan of exercise, drinking lots of water daily, increased salt intake, and meds to control my symptoms. She said that with exercise and increased activity, over time, I would slowly get better.

I started exercising by riding a stationary bike when I returned home. I was supposed to increase my time on the bike slowly. However, I wasn't able to increase much at all. My legs just didn't want to do it. They were too weak/fatigued and sore. The more I tried to increase my time, the worse I felt. Plus, if I exercised, I wasn't able to do anything else that day. Eventually, I quit. I have, however, continued to increase my activity. I am always trying to do more things around the house (laundry, dishes, cleaning up, playing with my kids, etc.).

Many of my symptoms have remained the same, no better, no worse. There is one symptoms that has been getting worse. That is my muscle pain and weakness. I guess I shouldn't call it weakness... it's easy "fatigue-ability". My ANS specialist at Mayo reminded me multiple times that I didn't have weakness; that I just fatigue easily. The aching/pain is definitely getting worse. I have a lot of discomfort in my hips, upper thighs and glutes. The more I do (even just walking), the worse it gets. When it's really bad, I almost walk with a waddle. I also have the same problem in my upper arms and shoulders but it's not as severe.

Both my cardiologist here in town and the one at Mayo have said at one point in time or another that they think something neuromuscular might be going on in addition to the POTS. My cardiologist here in town has been trying to get me to see a neuromuscular specialist since I returned from Mayo. However, I wanted to see if this treatment plan worked first.

Therefore, I am seeing a neuromuscular specialist at Mayonaise on August 11th and it can't come soon enough! Hopefully I won't be in a wheelchair by then!

Getting Out

I love fresh air. I love getting out and doing things. I am, or was, a very active person. I never used to sit around the house. I didn't play games on my computer (except for a few minutes while my daughter was napping). I loved to get outside in the fresh air and run, play with my kids, go to the park, etc.

Just prior to my illness I went to Colorado with my good friend, Jenn. I fell in love with it. We went white water rafting, hiking, etc. We hiked two peaks in one day, Grays and Torreys Peaks. Which have a summit elevation of 14,270 and 14,267 respectively. Jenn failed to tell me that I should climb something a little smaller first. Or maybe just climb one peak instead of two. The other problem is that I was trying to keep up with Jenn who can run a marathon in just over 3 hours (I ran a half in 2:30!). So, needless to say, that was one of the hardest things I've ever done. But I loved it! I couldn't wait to go back and do it again.

But here I am. Now, some days, I look at my stairs like they're Grays Peak. All I want to do is go run a race, climb a mountain, okay... run around the block for that matter!

I know there are things that I could get out and do. I'm just not creative enough to think of them. I can't stand or walk for very long at all without getting extremely tired. I'm almost to the point that I would forget my pride and use a wheelchair for long distances if I need to so I can spend time with my kids outside doing things. However, one, I don't have one and two, I said almost. The other problem is that our only problem isn't my illness right now. Chris, my husband, has been unemployed for quite some time now (that's a story for another post) and I had to stop working due to my illness. Therefore, that rules out anything that would cost money.

So, does anyone have any ideas for things that I could get out and do to help improve my mood and to spend time with my kids that wouldn't cost much (or any) money and also wouldn't require much (or any) energy on my part???

How POTS affects me

A lot of people aren't really sure how POTS/Dysautonomia affects me. Since my primary problem (and a major one at that) was a headache for many months, a lot of people don't realize that I have a lot of other symptoms. Therefore, I thought I'd share with you what a day in the life of Robin is like and what my symptoms are.

My POTS symptoms -

• Headache (duh!)
• Dizziness with change in position (standing)
• Tachycardia (elevated heart rate) when standing
  
• Blackouts when standing
• Nausea
• Constipation
• Getting full quickly
• Extreme Fatigue
• Exercise intolerance (by exercise I mean walking up a flight of stairs, taking a shower, or folding a load of laundry)
• Inability to handle temperature extremes
• Muscle pain
• Muscle weakness - especially in my hips, thighs and shoulders
• Neurocognitive deficits (forgetfulness, "brain fog", difficulty finding the right word, etc.)
• Tinnitus (ringing in my ears)
  

The longer I am on my feet, the worse all of those symptoms get. Towards the end of the day, if I have been sitting all day, those symptoms get worse as well. I usually lay down for awhile in the afternoon.

It doesn't take much for me to get fatigued. If I have to be on my feet for more than a few minutes to fix my lunch I usually have lost my appetite because I will be nauseous, tachycardic, and short of breath. If I do too much walking, my hips will be very weak and achy that night and all the next day.
My meds control my heart rate pretty well. Unfortunately, nothing has gotten rid of my headaches completely. Some days are just okay. Others are awful. The bad thing is that it never goes away. My pain is always at least a 2-3/10.

Work

If I haven't explained before, I am a Registered Nurse in the Emergency Room. Well, I used to be.

When I first started having problems my job/bosses really helped me out. They were really willing to work with me. I was so appreciative of that. When I was on medical leave, they saved my full-time position for me for multiple months when they didn't have to. I think part of the reason is because my shifts were being filled so it really wasn't affecting them negatively that I was gone. But, no matter the reason, I was very grateful. They said they would hold my position until May 1st and hopefully I would find out before then what was going on and whether or not I could return.

When I returned from Mayo the first of April, I informed my bosses what I had been diagnosed with and my prognosis. I let them know that the doctors said I should get better over the next few months but I would have to return to nursing, and being on my feet, slowly. Therefore, I would have to work four hour shifts, then eight, then twelve. I explained to them my plan to work as a monitor tech (a sitting position) for awhile while I got better. They were very receptive to my plan. They said they would be happy to have me back when I was ready to return and would do what it took for me to come back.

Now, two months later, evidently something has changed. I trained as monitor tech upstairs. However, the only shifts that are available are 12 hour night shifts. I struggled too much with a 12 hour day shift. It took me 2 days to recover from that. I just can't do a night shift. So I called the ER director to discuss picking up shifts as a unit secretary until some day shifts become available. Well, that's not going to be possible. He gave me a lot of reasons, that to me just sounded like an excuse. It's a lot of paperwork; it'll take a month or more to get it taken care of and by then there will be shifts upstairs; there's not a position open for US, and he'd have to create one; it's not in the budget; etc. etc. It's funny because when I talked to the other ER director, he said it wouldn't be a problem.

I think it's just time for me to put in my resignation. I almost wonder if that's what they want me to do.

The only problem... I am really having a tough time making that decision. I feel like if I quit my job, I'm giving in to my illness. I am not ready to make the decision that I am not going to get better soon enough to return to my job as an ER nurse. I also feel like if I quit, I am losing another part of me. Being an employee at that hospital is just one last part of me that I'm trying to hold on to. I am no longer a runner. I am no longer an ER nurse. I am no longer an active person. I am no longer an outgoing, happy person. I am no longer a thin, fit person. I am struggling to let go of that last part of me that is hanging on by a thread.

To see more doctors, or not see more doctors???

I have been trying to decide recently whether I should go see more doctors or not. I have mildly (maybe 10%) improved since I returned from Mayo on April 1st. The neurologist gave me the treatment plan of medications, lots of water and salt, and an exercise regimen.

So why should I go see more doctors? Well, there are a few reasons. First, the cardiologist at Mayo as well as my cardiologist here think that there is something more going on other than just POTS. My cardiologist has been a great advocate for me. When I returned from Mayo, he was surprised to hear that that's all they found. Both of them stated that I should probably see a neuromuscular specialist. Secondly, my muscle weakness and pain is not getting any better. The aching in the muscles around my hips gets really bad with minimal activity.

I did the exercise bike for about a month after I returned from Mayo. I quit because I wasn't able to increase my time on the bike like I'm supposed to, and it was just making me feel awful. If I exercise, I can't do anything else that day. Therefore, I have chosen to help my husband with caring for my children and chores around the house instead of exercising for 15 minutes each day.

So why shouldn't I go to a neuromuscular specialist? I guess I'm afraid it's just going to be a waste of more time and money (especially the $ part). I would really need to go to someone at Mayo since they already have all of my tests, ability to consult with other physicians including the ones I've already seen, etc. I have checked into local docs, but the ones that I would go to don't have appts for months.

The things that keep going through my mind... What if they still don't find anything? What if I'm worried about something else being wrong for no reason? However, if something else IS going on, I would like to know about it now so I can start treating it now.

Too busy

I have determined that there are just too many things going on for me to be sick. I just don't have time for this.

When this all started as a headache last summer I never thought it would turn into an illness that keeps me from working, raising my kids, being a good wife, etc. When I went on medical leave in December, I thought "I'll just get this headache figured out over the next month while I'm off work, fix it, and get back." When I had excruciating headaches everyday that kept me from taking care of my kids, I thought "this is still only temporary, they can be without an active mom for a short time."

Now, six months later (from the time that I got really sick), I am still not working and barely taking care of my kids. I try my best to go to as many activities as I can for my 11 year old (soccer, softball, etc). I try to read to, play with, and put my 3 year old to bed when I can. It's just still not enough. I need to be able to do more. There's just something everyday that I want to do but can't. I feel like I'm letting my girls down. Kylie, my 11 year old, seems to be let down almost daily because of my inability to do certain things with/for her. My 3 year old, Danica, of course doesn't show it as openly, but I can see it in other ways. We can't discipline her as well as I would like because I'm just able to help as much. She's still struggling with having accidents from time to time and she'll be 4 in July. I think it's because of the lack of attention she's been getting for the last 6 months.

My husband is awesome. He does the best he can. But he is taking care of both the girls and me, most of the time. In addition to that, he's trying to find a job while also working at a family member's rental house renovating it.

I just struggle with guilt everyday for not being there for my kids and not being able to work to help support our family. The kid issue taking precedence.

This all comes up today because I have kept very busy the last couple of days trying to get a few things done around the house so my husband doesn't have to do all of it. In addition to that, Kylie's home from school now. Between the softball games and everything else she wants to do (that I don't want to miss), I just can't do it all. Hell, I can barely do one load of laundry without it making my hips hurt the next day.

My first post...

As I seem to have a lot on my mind these days, I decided to start a blog. So here I am. I was diagnosed with POTS last winter, but I started having problems as early as Aug. '09. I really wish I would have started this blog last Fall. It really would've helped me to log my journey through all of this crap I've been going through.
I quit working due to my extreme headaches in the beginning of December and I haven't been back. I stayed on medical leave for awhile though. I ended up at the Mayo clinic in the end of March because the docs around here couldn't figure out what exactly was wrong. They thought it was POTS, but "there's something else going on".
Sure enough, after a week at Mayo (and thousands of $$), they diagnosed me with POTS. Unfortunately, I left there feeling as if they still haven't figured it all out. I have been home for 2 months now and I have felt the whole time as if something more is wrong.
In addition to my medical problems, my husband has been unemployed since last August. He went back to school for IT in Sept. It was a short program and he completed all of his certifications by the middle of Feb. We did fine with money while I was working because I made enough to cover us, as long as we made a few cut-backs (and his student loans helped a little). However, now we have no income other than unemployment. Oh yeah, I carried the health insurance. So we now have to pay a TON of money for cobra insurance each month. Luckily, my parents can help us out. Otherwise, we'd be homeless by now. Regardless, I absolutely HATE taking handouts. I have always wanted to earn my money. I have relied on my parents enough in my life. I should be done by now!

Well, this is just a post to tell you a little more and me and my situation. I will probably post often as this will be my sounding board. Please feel free to post any comments, feedback, etc.