Having a POTSY Time of It All

I don’t really give my POTS diagnosis all that much attention.

Today I read this: http://www.bendbulletin.com/apps/pbcs.dll/article?AID=%2F20090531%2FNEWS0107%2F905310408%2F1001%2FNEWS01&nav_category=NEWS01&template=print

It really made me think about HOW chronic illness in children sucks so much more than it does for adults. I mean don’t get me wrong, it sucks royally for adults, but before I got sick, I went to school, traveled, had lovers, published poetry, had art on display, learned foreign languages, studied an instrument, learned about the 5 elements, I loved, I lost, I learned, I lied, I lusted, I rode horses, swam in the sea, rivers and lakes, had flown in a plane, taken a train, a bus, learned to drive, been a Fire Fighter and First Responder, moved out on my own, found Art, got married and had babies. So…I had done a few things by the time I was imprisoned by illness. But children…they are having trouble getting out the learning gate and can’t even complete High School because illness ravishes their ability to learn; to concentrate and retain information. Let alone feeling well enough to exercise their young bodies and to enjoy being young. You can't join a team, go on a date, go to a dance, drive your first car, make out, go to the bar, sleepover at a friends house, go to camp, go to college or university, finish High School or go to Prom if you're too sick to get out of bed or stand up for very long.

I didn’t realize that POTS makes you so sleepy, lethargic, hurt and nauseas too.  I thought it was just a blood pressure thing that made you sort of fall down after dinner or if you got up too quickly.  I’ve had the pleasure of meeting some other folks online with POTS and I just assumed that their experience with POTS was way more severe than mine, and attributed my possible POTS symptoms to Masto. and/or Addsions symptoms.  Trouble is, there is a lot of overlap.  So what symptoms belong to what…and what treatment, if any, is best suited to it? Do you use an epi pen for syncoping/fainting/black outs? You do if it’s Masto. and is a drop in Blood Pressure due to anaphylaxis. But do you if it’s POTS related drop in BP and increase in heart rate? Or is it Addisons and do you just need extra steroids?

After I got the diagnosis from my Internist of this condition, I remember coming home to the computer and searching Google frantically for signs of good articles on the subject and only sort of ascertaining what fragmented piece of truth I’ve been carrying around the past while.  My Internist, when telling me this is what I had going on, in conjunction with Addison’s Disease and Mastocytosis, that I needed to be careful getting up from the dinner table after eating and to add more salt to my diet. But that was about all she said about how to manage it. She said I had so much going on, I might not even notice the POTS being POTS but it was present. I left there feeling like it was no big deal. She had sort of implied POTS would take a back seat to Masto. and Addisons.

Perhaps she was right.

The not so subtle observation - that is not lost on me, of course is that…POTS, like Addisons and Mastocytosis is incurable. HOW exactly is it I have ended up with THREE incurable conditions/illnesses/diseases at the same time??? How does this kind of chaos happen to a person? More questions than answers, right? Which always brings me back to the children. Thank God I’ve got these conditions instead of some kid having them. If someone had to have them, better me than a child, yes? (What kind of bargaining tool is that, huh?) Or thank the heavens that I got to experience a bit of life before I got saddled with these illnesses that have changed the course of my life; changed my body, changed my soul and changed my very Being?

I do know I’ll be paying a bit more attention to this POTS thing instead of blaming Masto. and Addisons, especially Masto.,  for just about everything. Time to get a bit more discerning and hypervigilant in my self-observations.

Christmas Day

Christmas. What a joyeous time of year. Time to get insular with the family unit. I love it.  This year marks the first time in over a decade that I get to spend time with my side of the family.  We moved back to Winnipeg this past Autumn and up until now my husband’s family have had the monopoly on such festive events (which have been lovely in their own right.)

Needless to say, we were up and atem at 7 am and on the road to Auntie Pam and Uncle Pete’s house at 7am. We got here, after picking up cousins in the city, about 7:45 am and the kids were all still sleeping. Coffee and tea were on, the living room was FILLED with presents and excitement filled the hearts of big and little people.

I, personally, had NO IDEA what was in store for me as I made no Christmas wish list. My Auntie Pam was amazing. She got me (from Santa) a sheepskin full body massive massage mat; a new heat pad (I blew out two this year), and a full body heated blanket throw…for a sick person, is there anything better for sick days??? I don’t think so….

What IS lovely is that I’m having a pretty good day, despite having to use an epi pen during the night. Despite being told that I HAVE to go to hospital when I use an epi pen  by my new Immunologist, Dr. Hicks, I didn’t want to ruin Christmas with a trip to hospital and felt better after I used it.  This was the 3^rd attempt at sleeping in my bedroom and the third choking reaction I’ve had in my own room/own bed. Not sure what is going on but something is awry in my bedroom. So after the epi pen, and puking a bit, I was wired for sound for a bit and finally fell asleep with Benadryl and sleeping pills on the couch.

I am still covered in the remnants of hives, which are still flaring every 3-4 hours if I don’t keep on top of the Benadryl, from some sort of reaction midweek. I needed an epi pen earlier this week too. I know, I was supposed to go the hospital then too. My legs are covered in little red dots from my scratching the tops of the hives off. I  know it’s time for more Benadryl because I start itching like hell. I’m starting to give my friend Scotty a complex. He came over last night and I started scratching….he said “every time I come over you start scratching. Are you allergic to me?” I assured him it wasn’t him. Just had a rough week.

On top of all this, I think I have a bladder infection today. I can’t pee, despite needing to really badly. Frak. Trying to avoid the hospital at all cost though.

Later:  had to use another epi pen. To go to hospital or not to go to hospital…on Christmas Day? OMG…no. We caught it early in the reaction, so really I felt a tonne better quite quickly.  I KNOW I’m supposed to go in but…ugh, I have prednisone, ranitidine, stemetil and Benadryl here, and most of that in injectable form so I can use that if I’m puking too.  There I was at Auntie Pams minding my own business and I just started flushing and hiving for no reason, then the uncontrolled, involuntary, hacking started, then mucus started forming in my throat and I started gagging and uncontrolled coughing, then it felt like a bear was sitting on my chest and my husband called it. It just keeps getting worse if we wait. We’ve done this enough times to know now. My family were very cool about the whole ordeal actually. With 19 people there to celebrate Christmas, it could’ve gotten ugly but I have a supportive family and they were great. They sequestered me to the couch with pillows and blankets and all kept an eye on me. I love my family. They made me stay there for the rest of the day.

You gotta love the unpredictability of Mastocytosis.

I hope your Christmas Day was infinitely less reactive and calmer. Merry Christmas, Happy Holidays and wishing you all the joy, personal peace, love, warmth and prosperity you can handle in the year ahead.

So, it's the end of another week. It was a pretty good one, overall. My Motherinlaw came to visit and we celebrated Christmas with her early...we pretended last Saturday night was Christmas Eve. and last Sunday morning was Christmas morning, complete with stockings and present opening. I roasted a turkey for dinner with all the trimmings. We watched Christmas movies and put Christmas music on. It was fun.

Only, now, it feels weird that we're doing it all over again on the 24th/25th. LOL. But we'll be going to my Auntie Pam and Uncle Pete's place out in the country, with all my cousins and their babies. It'll be a total hoot. I'm looking forward to it.

Our Manitoba Health cards came. It's official...we're Manitoba residents now.

Had to use an epipen during the week. My Motherinlaw gave it to me. She accidentlly misfired it though and in addition to cutting my leg with it, the needle cut clean through her finger tip and part of her fingernail. We had to watch she didn't get any epinephrine in her body because she has heart issues. Fortunately, she was fine. PHEW... Anyway, she used a second one correctly and the epi worked. My bloodpressure just suddenly dropped...at least that's what we think happened. I couldn't even sit up without feeling like I was going to pass out. I tried at least nine times to sit up, and each time was met with the same sensation...like my heart was 'backwashing', the air was suddenly thick, I was suddenly jello and couldn't hold myself up, and then syncope.

My Motherinlaw is a former nurse and she felt my hands and feet and said they were icy cold and the nails had gone bluish/purple...so in light of all of that and my knowing how these episodes usually go (I usually end up on the ground unconscious because at some point I HAVE to get up to pee or something...) we decided to get it over with. The epi totally did the trick.

So, I've been taking it fairly easy most of the week because it's been a few weeks of epi pens, benadryl and steroids. I've stayed indoors most of this week. I've asked for help. I've made shopping lists instead of trying to do these things myself and then getting icky. I've ordered food in when I've felt too weak or exhausted to cook.

Insomnia has been pretty bad this week though. Not quite sure what to do about that, as I take benadryl and sleeping pills to no avail.

I saw Dr. Glew, my new family Doctor, on Tuesday and we went over all my medication with a fine toothed comb. I think he thought initially that I was overly medicated and that we'd see what we could get rid of but once we went through it all, he realized I needed each and every one of the meds I'm on and why. SIGH...I was sort of hoping to get rid of some too. He DID, however, take me off Tramadol with Acetominophen in it because I was taking quite a lot of it for bone pain and he was worried about how long I'd been (and how much I'd been) using and the effects on my liver. So now I'm on straight Tramadol. Will let you know how it works when I try it.

I'm also relieved that he refilled my Stemetil injection script because that's vital for stopping nausea and my barfing sessions. Otherwise I'm barfing for weeks instead of days or hours.

We also discussed the panic attacks I've been experiencing as of about 3 weeks ago. Luckily, I have Ativan on hand, but hardly ever use. Panic attacks feel like you're having a heart attack, OMG, they are PAINFUL and SCARY!!! It's weird too, they hit when I'm totally relaxed and groovy. Dr. Glew said that he's hardly surprised with all I lived with that this is the case. I have the right medication for them, and it works. So GREAT, I now have THESE going on too. OH JOY.

My friend Drea gave me a beautiful bag for my birthday back in October with a book inside called "10 Days To Self Esteem". It's essentially a workbook, for (as the title suggests) leading you back to your Self and regrowing your Self Esteem. So, today I open it up and start reading it and I take the first two standardized Depression and Anxiety tests. Guess what? I, apparently, suffer with SEVERE DEPRESSION and SEVERE ANXIETY. WHY am I the last person to know these things!?!?!??! I know I shouldn't laugh at this, but I can't help it. It's kinda funny because when she gave me the book I thought to myself "WHY are you giving me THIS book???? My Self Esteem is quite fine, thank you." It turns out...it isn't.

Has everyone else known this about me all this time, and I haven't???

End of The Week

I woke up this morning feeling like a 90 year old woman. I swear to God, someone beat my body with a massive mallet while I sleeping. My husband looked at me this morning with sympathetic eyes and said "Oh Duck, let me get your heat pad" and motioned for me to get on the couch first thing. Thankfully I didn't have to make any lunches today or get anyone's breakfast.

I take Tramadol for pain now. I won't lie. It's not as effective as Percosets BUT Percs come with their own demons...like addiction, fierce mood swings, nasty temper, foul mouth and give me bad dreams. However, their pain relief is much sweeter and I miss that. Two Tramadols do nothing. Nor do three. If I take four, it takes about two hours for the pain relief to kick in but then it kicks in and works for a while. I don't reccommend that anyone else do this. I'm just saying what gets me through my own personal hell when it's present. Usually though, I just suffer. Oh, and Tramadol costs four times what Percosets cost, which is retarded. HOWEVER, Tramadols don't make me foul-tempered or make my children look at me and ask "Mummy, did you take that medicine that makes you angry?"...'nuff said. NO Percosets.

I still have no appetite. I've thrown up dinner the past two nights when I've MADE myself eat something. What's the point in eating.

I'm back to regular steroid use so I'm guessing the steroid honeymoon and inflammation relief is over. However, because I've been sequestered to the house and not eating or trying anything, I've NOT been reactive or in need of epi pens. YEAH!!!!

On another note, I'm going Christmas shopping with my husband tonight. For the rest of the world that might sound really exciting or like fun. For me though, it means sitting in the car, in Winnipeg, in the cold, directing the next purchases in the next store. I can't go INTO the shops. Not even to shop for my own husband. I have to tell him what I want to get him and he goes in and gets it for himself. There is no longer any element of surprise. You might say...can't you ask your family to help you? But my parents are Jehovah's Witnesses and don't celebrate Christmas or Birthdays; my brothers and sisters live in other countries or are dead; my cousins are busy with their own lives and it's not fair of me to bother them. I don't trust the internet to buy things online, except for Amazon and there's only so many books a person can buy. SO...Christmas and surprising my husband and shopping in general is a real challenge and I find it really hard NOT to get bummed out about it all. I used to pride myself on being a really great gift giver. This has been a hard pill to swallow. Yet another harsh Mastocytosis bit of mayhem.

So, I have my list. Hubby and I will trek out in the car. I will get a Tim Horton's coffee to keep me warm and my Hubby will go in and out of the stores doing my bidding and will, checking my lists, coming out and letting me know what IS and ISN'T available. Somehow, Christmas STILL manages to happen...the magic STILL happens and the smiles still bless the faces of my children come Christmas morning...so we must be doing something right.