Small Victories

I went to the store today on my own. YAY! I didn't freak out or have any anxiety about it. Often times I only post the negative things that happen in my life, so I thought I'd throw in a good one!

My headaches are gone, so I have to assume it was the florinef. I'm bummed about it, but at least I feel better now.

My weight has been up and down. I lose/gain 5 pounds give or take from day to day! haha Very weird, but I've always been like that for as long as I can remember.

Today the sun is shining, so that helps. It's a little chilly and quite windy, but I'm happy. The cat grass is finally sprouting outside, so the kitties will have a treat in a few days.

Headaches

I have been getting TERRIBLE headaches lately. They will come out of no where and I feel so awful. My husband thinks it's the stupid florinef. /sigh I'm not sure at the moment, but it's been like 5 days straight with it! It hurts on top of my head, but also behind my eyes. It's worse when I bend down or try to lift anything like my head is going to explode. I never got this when I was on the florinef before, so I don't know what to think. It is allergy season as everything is bloomed, but I never had any allergies before.

It just seems like I am always battling something.

Tomorrow I am watching my nephew and I'm already nervous about driving down there. Actually I'm not nervous about the drive. I'm nervous about being away from home. I am scared to go to places without my husband with me. I had a major panic attack the other day when I had a chiropractor appointment. My husband ended up driving me because my blood pressure was like 130/92 (crazy high for me), I was freaking out and just started crying.

Had A Good Day

Today I had a good day and I don't know why. I hate that. If I had changed something to make myself feel good, then I'd be more excited. Oh well I'll take it.

I feel more puffy again though. The fluid retention is returning...

I've Been A Wreck

I really don't know what is going on with me, but I haven't been doing too well. Basically here is how things have gone down.

1) Went on beta blockers a few months ago with huge, life-changing improvements.
2) Started gaining some weight, fluid retention.
3) Developed Chilblains on my toes.
4) Heat wave set me back with heat intolerance, rapid heart rate
5) Added in Florinef to see if that would help
6) Anxiety begins to set back in
7) Increase florinef to 1/2 tab to see if anything changes, Added in Rx potassium too.
8) Feeling jittery, shaky, "out of my mind" like I drank too many red bulls or espressos

That's where I'm at right now. I cannot for the life of me figure this out. What is happening? Did the florinef do something or am I just getting worse because I am just getting worse?

Today is my birthday and when I should be happy, I'm pissed off. I'm not any freaking better. Yesterday was one of my worst days in like 8 months. I was soo jittery and shaky. Nothing would calm that down and then the nausea set in later on in the day. HC didn't help it, so I just forced myself to eat. I really wish I could see what is wrong and then fix it.

Fluid Retention

Oh my goodness the fluid retention is actually HURTING. I can't take this anymore. What am I supposed to do about this? My calves are huge, my wedding ring is barely fitting now and I just look like a freaking balloon.

First time for everything

Today was pretty hot as I complained about earlier. Tonight as I was making dinner, I noticed that I was feeling really nauseous. It really just came out of nowhere.

Dinner was ready and I started eating. By the time I was finished, it felt like a pile of concrete was in my stomach. All I had was 2 chicken wings and a salad...

I was getting this fullness near my breastbone and I started to get the chills. The waves of nausea were getting more frequent and even more uncomfortable than the last. Out of desperation, I decided to sublingual a 5mg HC tab to see what would happen. I was not late on my doses and I didn't particularly do anything strenuous to need a "stress dose". However within 5 minutes, I knew that the HC was helping. I sublingual-ed another 5mg because I figured if I was that far down the low cortisol chain, I wasn't far off from my BP dropping and it heading into something much more dangerous.

Today I can say was the first time that I've experienced nausea to that extent from low cortisol. The sad thing is that I have no idea what triggered it. Within 20 minutes of taking the extra HC, I was up and about doing my normal nonsense. There's no way it was placebo as I had my head in a bucket getting ready to barf. It sort of freaked me out because I showed no other signs of low cortisol! I ended up taking 32.5mg of HC today.

Heat Intolerance : I'm screwed!

I was really hoping that the beta blocker would help with the heat intolerance, but I'm not that lucky. I figured this would happen, so I started taking 1/4 tab of florinef 4 days ago. I haven't noticed any differences yet, but I'm not looking forward to the weight gain THAT med will cause me. Ugh...I've gained like 10 pounds just in time for summer. It's not supposed to be like that.

I was going to lay out today because it's 80 here, but I can't. There's no way my heart can handle it at all. I didn't have my watch on me, but I bet I was hitting 150 BPM.

Some days I just want to start throwing stuff, punching holes in walls and screaming at the top of my lungs. As you can guess, today is one of those days.

Would I Be Happy If...

...Time to just step away from POTS for a moment and to just let my brain flow for a moment...

I was told as a young women to love myself, embrace what we are given, don't be jealous of what one another has yadda yadda yadda. Whatever. Yet all of that is a bunch of nonsense to make ourselves feel better about how we will NEVER match up to what is "expected". Seriously. You don't see women with pear shape figures in lead roles in movies, TV shows or on magazine covers. You don't see many women with small breasts either and if they are small, they are taped, wrapped up or squeezed into corsets to look huge. I know some of you are thinking...Well that isn't our fault. It's the media's fault! I guess it doesn't matter WHO'S fault it is, it's what is expected these days.

The question I've been thinking about for the past few days has been...Would I be happy if I had full, normal sized breasts? Even the girl at Victoria's Secret told me that none of their bras fit right because I have zero chest fat. In her words, "you have nothing to push-up". This girl likely sees hundreds of women a week and I was one of the first for her with this problem. Considering that, sadly, I think I would be happier. Does that make me a pathetic person controlled by the media? Nope, I just want to fill-out a bra for once in my lifetime and not be self-conscious about it.

Okay enough of that. I'm just really frustrated with myself lately. Where's a punching bag when you need it?

/sigh

Uh What is this about?

I remember I posted some weeks back saying that I was the thinnest I had been for a long time. It was a nice! Well... in the past 2 weeks, I've gained so much weight that I am now the heaviest I've been for a long time. How the HELL does this happen to me? I feel like a balloon ready to pop and I suspect it's from the beta-blocker. I am holding onto so much water it's not even funny. I know this weight is not fat because my face and eyes are also very puffy and I haven't changed anything in my diet.

Seriously like 3 weeks ago I was thinking that I'd take myself to the store to buy new smaller jeans and now I'm thinking I'll have to go up a size. How does one gain like 11 pounds in 2 weeks?

I'm soo depressed because of this. My pants look terrible on me. I had a pair of skinny jeans I wore fairly often (and liked how I looked in them) and now they look terrible. AHHHHHH. I hate this!

MRI didn't go so well

I had the MRI today ordered by the ophthalmologist to rule out any sort of problems with the eyes or brain.

For part of the MRI I had to keep my eyes closed. This was OK for about 10 minutes, but then I started to get really disoriented and it felt like my body was floating on water. I tried to calm myself down, but I was well beyond that and felt the adrenal symptoms coming on. My eyelids started fluttering, I started to feel very faint and I just felt that last rush as my body tried to pull me through the stress of it. I realized at that moment, that if I didn't squeeze the ball and alert the techs, that I'd be unconscious in about a minute.

I squeezed the ball, but could barely talk. They ran in and I told them in broken speech that I needed my hydrocortisone for adrenal insufficiency. The lady asked me if I had them in my purse and I told her yes. She ran out and got my purse. They sat me up and I was very very faint. It felt like my blood pressure was scary low and the whole room was sooo bright. They walked me out of the MRI room into the tech area and they were asking me questions, but I could barely understand them nor get the words out. I ended up taking 15mg of HC and waited 3-4 minutes before I could feel my body come back to life. My hands were trembling as I drink water.

I went back in and finished the MRI. Phew...The whole time I was just like..please do not freak out again. I need to get this done. Please...please.

All of this happened before the contrast so it had nothing to do with that. Thankfully. I'm doing okay now, but could not believe how much that affected me!

Chilblains: From the beta blocker or B12?

Remember those weird itchy, but painful bumps on my toes? Well now I know what they are and it's either a complication from the beta-blocker or from low B12.

These little bumps are called chilblains and they occur when you are having poor circulation or if you warm the feet too quickly. Here's a link to a medical website that talks about them in more depth.

I started taking the beta-blockers about a week before these bumps showed up. At first they were very very itchy, but as long as I kept them covered it wasn't so bad. Then I noticed anytime my feet got warm, they'd burn like hell. Not long after this, my left leg started to feel numb like it feels when my B12 is low. I even made a post about the paresthesia returning.

I'm trying to put the pieces together. Maybe the "paresthesia" is from the beta-blocker and the poor circulation is then causing the chilblains too? I looked all of this up and it is possible according to this website.

"Some drugs such as beta- blockers may affect the circulation and cause chilblains"

Darn it. I might have to call the doctor and see what he has to say about it. The beta-blocker is helping so much I'd hate to have to quit it...

My Blood Pressure

As always my BP is low without florinef, but for whatever reason it's not any worse when on the beta blockers. I'm not complaining.

Tonight I thought I'd take my BP while sitting. Then take it immediately upon standing to see what happens. Normally my heart rate would go through the roof and my BP would fall even further.

Here's what it showed tonight.

Sitting: 92/66 HR 76
Standing: 95/68 HR 70

70....70 while STANDING! I don't care WHY, but these beta blockers have been amazing. I have an appointment with my EP on March 12th.

I think it might be impacting my thyroid slightly though as my basal temperatures have been really really low. Ugh...It's actually confused the LadyComp, which is what I use as my method of birth control. It's day 20 and it doesn't think I've ovulated yet... My temps aren't indicating that I have either, so I'm not sure what's up with that. Lately my cycles have just been odd. I used to get mid cycle pain, but that's gone now. Then my cycles used to be 24 days, but the past 2-3 months they were 29, 30 and 32. However, last month my cycle was only 26 days long. I don't get it at all.

Beta-Blocker Is Still Working

It's been a few weeks and I am still feeling very well on the beta-blocker. I take the generic form of Toprol XL called Metoprolol ER. It's a very small dose at 25mg. Going on them has been incredible for me and I will continue to take them as needed. The past week, I decided to start taking them every day as soon as I wake up and I haven't noticed any ill effects. Some days they do seem to make me feel a little tired, but it's not that bad. Certainly no where near the fatigue I felt prior to going on HC! haha

This week I need to clear the area out around my recumbent bike and I'm going to start working out again in small increments. I'm not really looking to lose weight or anything. I just want to get off of my butt and feel normal. I'll start out with 3 minutes (no joke) and then work up to 1o minutes. I won't go much more than that because I don't think I'm in good enough shape to be biking for 30 minutes or more. My adrenals are doing okay with the HC, but I don't want to push it since I'm not on florinef at the moment. I know I need it, but I can't start it yet.

Bumps on Foot, Getting Worse

Darn it. Why can't things just get better on their own? /sigh The bumps on my foot are getting worse. Very painful and making it difficult to walk. The original bumps have subsided, but the skin is still very shiny and red where they used to be. Now there are more bumps spreading on the surrounding toes, but these ones are way more painful than the original bumps.

I'll probably have to call the dermatologist on Monday and make an appointment. I'll let everyone what they are when I find out.

Leg Numbness and Tingling: Paresthesia is back

Ugh I hate this feeling! Let's hope that it's just low B12 because I can fix that (as soon as I get this STUPID Nutreval test done). Let's hope it's NOT the beta-blocker...! It's been awhile since this has happened because I take B12 sublinguals and I also get injections anytime I feel this coming on. Well since I was supposed to get the Nutreval test done, I stopped all vitamins and now it's coming to bite me in the butt. Just sitting at my computer desk, from the top of my knee cap all the way up to my hip is going numb, tingling. If I cross my legs or sit in one spot too long, my entire leg gets pins and needles. At night I am waking up constantly because my legs and hips are falling asleep. Oh my, I can't take this! I got to get this test done now before I go nuts.

Once the test is done, I have injectable B12 here at my house! I'll be injecting myself to save some $$ and if that helps I'm going to beg the doctor for a prescription. My mom said that her grandparents BOTH had pernicious anemia and had to get injections...Great. I wonder if that's why mine is always low and why I always have to keep taking a combo of sublinguals and injections to keep the numbness away. Maybe it's not just a dietary issue, but an absorption issue.

At the Eye Doctors...

It was an interesting visit with the more experienced ophthalmologist. First he said that I do not have a posterior vitreous detachment...Um....Okay wow? So I had 2 other doctors in that same practice tell me I did and then this guy says, nope.

He was quite concerned about the blobs, lines and "stuck" lights in my vision and has asked my PCP to order an MRI. He said that there is nothing wrong with my eyes and the White Without Pressure is absolutely nothing to worry about. He thinks the lights are neurological so I'll do it just so I can cross that off the list.

I was sort of ticked off yesterday after hearing all of this because what the HELL have I been doing for the past 8 months? I've gone into that eye doctor numerous times, examined at least 4-5 times by 3 different doctors and they all said I had a PVD? Perhaps those other doctors need to be retrained.

The good news is that, IF there is no structural damage done to the eye, then maybe I can solve the weird lights. Perhaps it's nerve damage from a mineral deficiency after all?

I got some old labs from Dr. G yesterday as well. I'm going to have my parathyroid checked as I had a few calcium levels above 10.0 with a low vitamin D level. I also am looking to have Intrinsic Factor antibodies and Parietal antibodies checked to screen for Pernicious anemia. My first B12 reading was 249! An interesting thing is that my FT3 before cortisol treatment at that time was 320 (230-420) which isn't all that bad.

Ugh Sinus Infection? Mild Flu?

My husband had some flu-like sinus bug for a few days and I thought I was lucky and completely dodged it. Well yesterday I woke up and my sinuses were clogged, throat was hurting from all the drainage and I just felt really out of it. DARN! I was really hoping that I'd missed this one. I don't feel achy or anything like that. Just clogged up, no taste, no smell and my ears are popping when I yawn. I took some extra HC and I think I'll be stress dosing slightly until I feel better. I did a lot of shoveling the night before I got sick. Maybe that's not a coincidence?

It could be a lot worse, but maybe it hasn't completely hit me yet...hahah

I forgot to mention...

...that I went to the eye doc last week some time. I got really sick of this light being stuck in my vision. The one lasted nearly 4 days. I finally found someone online that has this exact same thing as me, but sadly this thread was from 2007 and no one found anything wrong with his eyes. These lights only started AFTER I was diagnosed with the posterior vitreous detachment, so one would think there's a connection.

I saw the retina specialist I had seen originally who diagnosed the White Without Pressure and an impending vitreous detachment. This time he told me that the White Without Pressure looks really odd and it's not something he's ever seen before...Um. thanks? haha Now he wants me to see one of the more experienced retina specialists who has "25 years more experience than me". He said that since he's never seen this before, that he wanted someone else to take a look to see what we should do. He said that if this other doctor thinks it's necessary, then they may want to do pre-emptive laser surgery on it. I'm not exactly sure what is weird about it. He just said that it looks really odd, shiny, and very iridescent? These are the best, most recommended ophthalmologists in this area, so if he hasn't seen something then this definitely needs checked out. This doctor probably sees at least hundreds of eyes every week! He said that once he hears from the other doctor, then in 25 years when another case of whatever I have comes through the door, he'll know what to do...wtf? No one really has this? haha

The doc said that the lights I'm seeing may not be related to the White Without Pressure, but since I'm having some problems it's all the more reason to be seen. My appointment is February 15th.

Too Much Snow

We got A LOT of snow. It looks like up to 2 feet is outside right now and I have NO IDEA how we are going to shovel it all. Last time I tried to shovel snow, my heart rate nearly hit 200, I began to shake and I thought I was going to vomit and collapse. It took me nearly an hour to recover and that was only 10 inches of snow!

I took my beta blocker already, so that when I go out it should be working. I'm going to stress dose for this too with the HC and see what happens. I do not recommend anyone do what I'm doing... I'm just absolutely nuts/insane and don't want to see my husband do all the work. We both have "heart problems" now and I hate to see him get stuck with this.

Update: Shoveling went really really well. My heart was definitely up there, but I did not feel so fatigued,short of breath and faint. We still have another round or 2 to go, but I'll be okay. I did better than my husband...It HAS to be the beta-blocker. There is nothing else that is different and HC has never helped my heart problems.

Here are my blood pressures Sitting. 105/73 HR 89 Standing 117/69 HR 92 What a difference!

How'd that happen?

I noticed my pants were feeling kind of loose, so I jumped on the scale today. I've lost like 10 pounds in approximately 2 weeks or less. Holy cow...This is not good though as it is a sign that I'm ready to crash or something. Maybe it's my adrenals? Maybe it's all the emotional stress I've been under? I haven't weighed this "little" since before hormone replacement.

I guess I'll just enjoy it while it lasts because I know it will all be back sooner than later. My appetite has been pretty awful lately, so I bet it's that. I'd love to stay at this weight, but it's not going to happen and technically I'm underweight too...