Well Hello Again...

It's been awhile! I think I've taken the stance of "If you don't have anything nice to say, don't say anything at all." I've definitely not had the miraculous recovery I was hoping for and my improvements have been small and slow. Logically, I knew this was to be expected but it's disappointing nonetheless.

I'll start with the positives. My energy level has improved. I would guess this has to do with the B12 supplement. I'm still taking an oral supplement and I think within the next month or so we'll be re-checking my levels to see if there's been an improvement. As I mentioned in an earlier post, my nausea has also improved. It's no longer 24/7 which is amazing! My "extreme episodes" which usually happen at night are also becoming more rare. Some nights I feel like I'm right on the verge of one of these episodes, but the Allegra/Zantac combination seems to put an end to it. I can feel it the moment those meds kick in and my body instantly relaxes, allowing me to pass out and sleep through the night! Hooray for that!

Logically, I know I've come leaps and bounds since last December. I've had a very active summer so far. Most active days cause me to feel a little like road kill the next day, but it's so worth it for the memories made.  In December, I was so ill that being active wasn't an option. I wasn't able to shop for my girl's Christmas gifts and when they opened them, I watched from the couch. It was the worst form of torture ever, right behind waterboarding! 

So, overall I'm doing much better but I'm still dealing with a ton of daily symptoms that are making me miserable! My everyday symptoms are congestion, ear ringing, tachycardia, shortness of breath, red irritated eyes, sore dry throat, painful joints, burning in my mouth and tongue, burning in my stomach, and palpitations. I've also been having days with extreme weakness and tremors in my arms. It's a lot like having the flu for the past seven months.

After discussing these symptoms with Dr. Goodman, he decided to add a small dose of Zyrtec to my cocktail. Hopefully that will take care of some of these symptoms. For now I'll say positive and push on and I promise to post again soon!

"But the Lord is my defence; and my God is the rock of my refuge." -Psalms 94:22

Amy

Cocktail Update...

Wow. It's been a while! I wish I could say it's because I've been miraculously healed and too busy living life to blog. I would love to be climbing Mount Kilimanjaro, running a marathon, or bench pressing a small automobile! More realistically, I'd be ecstatic to carry my toddler up a flight of stairs, jog a half-mile, open a jar of baby food without struggling for five minutes, paint my kitchen ceiling, or mow my lawn. Baby steps.

So, the MCAD cocktail is slow-going. Slow as in watching a snail and a turtle race. I'm trying so hard to be patient and give it time. I know it's a gradual process but it's hard to take things a day at a time when you don't feel well. I think it's similar to having a job. It would be much more fun to go right to the promotions and pay raises and skip over all of that hard work nonsense!

The first few days on the Cocktail, I started with half-doses. Dr. Goodman didn't necessarily recommend I do this but I always get nervous with new meds. I had some pretty not fun reactions those first days. I'm now up to full doses (using name brand Allegra and Pepcid as I reacted to the generics). I'm no longer having the bad episodes but I feel pretty crummy overall. My stomach problems are worse than they've been for a while, my arms are extremely weak, and I'm having a lot of lightheadedness.

I'm going to call Dr. Goodman next week and check in with him. That will mark the two week point with the new meds. I'm interested to see what he says. I'm hoping my body is just slow to adjust and that things will get better. I expected these meds would either help or not, I wasn't expecting to actually feel worse. It's been a little discouraging and sometimes I feel like I'm digging my way out of quick sand, but I'm nowhere near finished with this battle. If these meds aren't my answer, then we'll try something else. There may come a day when I have to accept this as my new normal, but I'm stubborn and not ready for that yet.

"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

Amy

First Day on the Cocktail

I started the cocktail of Cromolyn, Pepcid, and Allegra yesterday. It can take two to six weeks to start noticing improvements so I'm not surprised that I haven't noticed anything yet. I did have issues with the Allegra and Pepcid yesterday.

I took the Allegra in the morning and shortly after had a little episode. A wave of nausea, tingles all over, tachycardia, goosebumps, muscle weakness, etc. Then, I took the Pepcid at night and had issues with that as well. I kept having adrenaline surges as I was trying to fall asleep. Everyone has those moments right as you drift off to sleep when it feels like you're falling and you jerk awake. These adrenaline surges are similar to that but include tachycardia, gasping for breath, and sweating. Then I had another episode that was a mild form of the same episodes I dealt with after surgery.

It's common for people with Mast Cell issues to have sensitivities to medications. The pharmacy gave me the generic forms of the Allegra and Pepcid and I'm thinking that's what the issue was. A lot of MCAD patients react to the additives used in generic forms of medications. So, my hubby is going to get the name brand forms of those drugs and I'm hoping that makes all the difference!

On a side note, I had a great weekend! The girls and I went to my hometown for my cousin's graduation and it was great to see everyone! I've always felt so blessed to have grown up in a small town! At the graduation, I was bombarded by caring people. I received hugs and pats on the arm. I was asked sincere questions about how I'm feeling and what I've been going through. I was given many well wishes and reminded of all the prayers I'm still receiving. Unbelievable! That little community is so supportive and it was wonderful to be back! Thank you all so much!

"Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind." 1 Peter 3:8

Amy

A New Cocktail...

Well, I'm starting a new cocktail. Not exactly the kind of cocktail I'm really craving, but hopefully it'll do the trick regardless. It's the Mast Cell Activation Disorder cocktail. That's a mouthful! Why can't these conditions have nice short names. Now, when a doctor asks if I have any known conditions I have to rattle off Postural Orthostatic Tachycardia Syndrome and (if these meds work) Mast Cell Activation Disorder. That mouthful will be shortly followed by a dumbfounded expression from the hypothetical Doc as most have never heard of either condition.

The cocktail consists of Cromolyn, Pepcid, and Allegra. The Cromolyn is a liquid that I will mix with water and take four times a day (30 minutes before each meal and at bedtime). It is used to prevent the mast cells from degranulating which is a fancy word for spilling their nasty toxins into my system. The Pepcid and Allegra are just your regular old H1 and H2 blockers. They block the histamine that the mast cells release as the Cromolyn won't be able to completely stabilize things.

I'm praying this will help as these past few weeks have been miserable. The shortness of breath has still been better and I'm thanking God for that! I didn't even realize how much of an issue it was until it was gone. Amazing and so thankful for that! The rest of my symptoms are being more stubborn. The nausea, brick in gut feeling, muscle weakness, tinnitus, puffy eyes, tachycardia, extremely dry throat and skin, etc. has all been terrible since I've been back from Arizona. I think it's probably a combination of seasonal allergies along with all the other things I have going on. Whatever it is, it's miserable.

For Mother's Day we took our kiddos to the zoo. Our toddler LOVED it! She didn't want to leave the Prairie Dogs which makes sense since her best friend is her stuffed Prairie Dog named Baby Jack. He's the ugliest stuffed animal I've ever seen, but she adores him! We were only there for a couple of hours but I felt as if I had walked for days! I had a migraine, my heart rate was through the roof, extreme muscle and joint pain, terrible nausea, and lots of pressure in my head and ears. It gets frustrating! Shouldn't a mom in her 20's be able to take her girls to the zoo without feeling like she's been hit by a truck? I'm sure it will take me a week (or more) to recover from that little outing. It was completely worth it for the memories made and time spent with my little family, but frustrating nonetheless. One of these days I may need to swallow my pride and use the train tours or (gasp) use a motorized scooter, but that's a topic that deserves a post all it's own. When you appear healthy on the outside, it's hard for people to understand you might actually be disabled! I'm afraid if I cave to the scooter concept I would ride around with a middle finger in the air in response to the dirty looks ignorant bystanders might give me. I should mention that I'm normally fine walking. I only struggle when it's excessive (such as at a zoo or shopping). Considering this new cocktail is going to work, I won't need to worry about a scooter! The power of positive thinking! :-)

"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28

Amy

Some Things Are Worth Fighting For...

Ugh!  That moment when you NEED coffee, really need it, but the hubby just left for work and I've realized all to late that my hands are not working this morning.  They are completely stiff and achy!  The foil cover on the coffee creamer was created by Lucifer himself!  I can and do drink my coffee black, but I was craving creamer this morning!  I've had sick kiddos the last couple of days.  I've been surrounded by buggers, fevers, and poop and if I'm going to survive this day I NEED COFFEE WITH CREAMER!!!  I was willing to fight for it and fight I did!  Just as I was about to break down in tears, the heavens opened, the angels began to sing, and that devilish foil peeled off of the creamer container!  Maybe I'm being slightly dramatic, but it was a moment worth celebrating!

Catastrophe averted!  But, speaking of things worth fighting for... I had decided I wanted to be medication free when I went to Mayo in a couple of weeks.  I'm not taking many meds right now.  Just a Zyrtec and Zantac every morning so I thought it would be no big deal.  I was wrong!  Apparently those little pills are helping more than I realized.  I tried to skip them yesterday and by noon I felt so crummy that I had to take them.  I was shaking, had a headache, and was so nauseous I couldn't eat!  So, now I have a decision.  I've talked before about how great I am with decisions!  Ha! 

I was really hoping to be completely off all medications so the tests at Mayo reflected how my body is really acting on its own.  If I only had a two  hour car drive to get to Mayo, I would suffer through, stop the meds, and deal with the consequences.  That's not the case, though.  We're flying.  Those who know me, realize what a basket case I can be on an airplane.  It probably didn't help that the first time I ever flew, an older lady sitting next to me mentioned her worry that the landing gear wouldn't fully lock in place just as we were landing.  Gee, thanks for putting that thought in my head!  So, my stomach is usually a bit knotted up when I need to travel.  I don't need to add nausea from stopping my "cocktail" as I call it!  It's not so much myself that I worry about, as the other travelers around me.  I'm sure they would rather I didn't share my morning breakfast with them.  Not to mention the hassle of an emergency landing if I tried to jump out of my seat to make it to the delightful airplane restroom and subsequently pass out, hitting my head on the arm-rest of the poor business man next to me.  Hypothetically of course!  By the way, I don't think of myself as a pessimist.  More a realist with a worriers perspective!

So, I'll go drink my lovely cup of coffee and mull it over.  To med or not to med.  Wish me luck!

“For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him."  John 3:16-17

Amy