Long Road Still Ahead

As inline skate season looms and I'm still nowhere near 100%, I figured it was time for an update. I'm sorry to deviate from the main purpose of this blog but this is still part of my journey. I've been enjoying the cold, gray, snowy days because the sunshine makes me think of skating and running and being outside; and not being able to do those things depresses me even more. At this point I don't know if I'll ever do them again. Oh I know, I have people telling me "You'll be back! Stronger than ever!" but the truth is - I don't know that for sure. I might not be. I HOPE so, and that hope is what keeps me going; but I have come to terms with the possibility of it not happening. 

Here's what I do know - my body is still pretty jacked up. I'm on doctor #4 as far as hormones go; but this one seems to be more focused on my thyroid. I was diagnosed hypothyroid several years ago, and have been on medication for it. Last year my numbers suddenly shot high; then after lowering my medication, they were good for a short period of time, then suddenly dropped. I raised my medication again, but my numbers are still low. My dr thinks I have Hashimoto's Thyroiditis. This would explain some of the symptoms I'm still having. She ran a few tests, and my tests came back pretty conclusive of Hashimoto's. I do not know what this means for me yet, it's an autoimmune disorder, I've been reading that one thing that may help is cutting out gluten.

I see my doctor again on the 19th to discuss a different delivery option for my hormones, I'm still fluctuating a lot on the cream and not absorbing right. These fluctuations make for some pretty bad days; I'll have a day where I'm suicidal depressed; next day I'm happy as a clam. Some days I can drive like normal; next day I'm so anxious and panicky I can't even walk to the mailbox. It's FRUSTRATING. I'm considering BioTE hormone pellets, I am hoping to have those inserted on the 19th. They seem to release a more consistent dose of hormones. I'm sure we'll discuss the thyroid results and what that means for me as well.

I'm still having issues with the Gastroparesis, but it seems to be getting a bit better. I got down to 115 lbs in December but since starting the hormone cream I've gained 10 lbs. The bad news is that part of it is due to horrible sugar cravings; so I'm not eating quality foods. The weight I've gained is also all in my stomach; so I have these little stick arms and legs and a nice round stomach. Gross. I'm hoping the pellets will balance out whatever is causing these cravings; they are horrible. I end up eating stuff I shouldn't and them I'm uncomfortable for the rest of the day...

Also - still with the shortness of breath and no idea as to what's causing it. The slightest bit of exertion (like a short walk, less than a mile) leaves me winded and feeling like I'm starving for air; this sensation triggers panic attacks. I've had 2 panic attacks while out on walks; and one while walking around shopping. The panic attacks have gotten better, I am no longer taking Xanax during the day; but I'm stuck in a cycle of situational anxiety where I avoid the things and places where I've had them. I am extremely uncomfortable driving by myself; although I can now ride as a passenger in a car without medication or having any discomfort. I see that as a positive sign of progress. I just wish I knew what was causing the shortness of breath - it's very disconcerting.

I saw my GI doctor last Thursday and that too was disheartening. She was abrupt with me, told me I needed to accept my diagnosis of Gastroparesis and quit looking for some magic wand that will make it go away. She told me to buckle up because I was looking at a good decade of struggling with menopause and getting my hormones balanced. I wanted to punch her, I left her office in tears. She wrote me a prescription for an antidepressant (Elavil) which is supposed to help with the 'visceral response' to the discomfort of Gastroparesis (example - my stomach bloats and makes it harder to breath; that triggers panic. This medication is supposed to help with that.) Then she told me I can't take it until I get my other hormones sorted out - so who knows when that will be...

I'm not a fan of medications as bandaids anyway, I hate it when doctors throw a prescription at you and send you on your way without even trying to dig for the root of the problem. It pisses me off. I know that by correcting the primary issue (in my case I honestly believe it's hormonal; be it thyroid or sex hormones) that the gastroparesis will calm back down. I am sorry, Mrs. GI doctor, but I do not just accept this and I do think I can fix it enough to regain my quality of life. I've always had slow digestive transit; but never to this extent. I believe that when my hormones went haywire, my gut did too. I still believe that once I find the balance with hormones and nutrition then I should be in a much better place.

And that's where I'm at. I already know for sure that this year will be a sidelines year for me, but I've accepted it. What else am I going to do?

Still Holding On

I'm almost afraid to write this. My life has been a roller coaster ride for the past 8 months with no signs of slowing down yet. Every time I think I'm on the way up and I'm in the clear; I take another ride down. The rides down are harsh and do some serious damage to my confidence. I know this is supposed to be a skating blog and I sincerely hope that soon it will be once more; but for now it's a place for me to work through the situation and update anyone who is wondering how I'm doing.

I'm trying not to feel angry, or bitter, or let down. Nobody told me it was going to be like this. Nobody told me that this stuff is all tied together, our bodies work in harmony and when the chemicals that drive those systems go wonky - everything goes wonky. My GI doctor had no idea if my hormone imbalance was affecting my digestive system; research I've done says yes it is. My original gynecologist said there's no way my anxiety and panic attacks were caused by my hormones being out of balance; research I've done says yes they are. I think it sucks that you have to go out and educate yourself about these things; then go back to your doctor and tell them they're wrong. I know, I know, just because I 'read it on the internet' doesn't make it right. But I'm reading medical research documents, I'm comparing to postings by numerous other women, I'm reading blogs and articles posted by members of the medical community. I can tell you from experience that my digestive stuff IS getting better since using the hormone replacement cream; I'm eating more, I'm gaining weight, and I'm not having as many issues as I was having before. (Like constipation or feeling overly full and unable to take in enough calories.)

In the meantime, my primary care physician is still out on leave - he should be back in a couple of weeks. It has been very hard going through all of this without his guidance and advice. The PA they have filling in for him pushed two types of antidepressants at me and won't give me anymore Xanax. She also got mad because I wouldn't drop my thyroid medication down to bring my TSH levels up - so she's still in the dark ages as far as how to dose for thyroid as well! I refused to drop my dose so she wouldn't refill my prescription - I asked my hormone guy to do it. He also goes by TSH unfortunately, but at least he filled my prescription. The problem is that I'm having hypothyroid symptoms, so I increased back up to my original dose on my own (from 90 mg to 120 mg) because based my my T3 and T4 numbers I already know that my primary care doctor would've done the same thing. Been on that dose for 3 days now and I'm already feeling better.

As far as my other hormones, I saw my doctor a couple of weeks ago and had blood drawn, my estrogen levels barely budged (went from 52 to 54) and my testosterone is still below optimum; but my progesterone was really high. So he cut that back and increased the E and T. Been on that dose for about 3 1/2 days and yesterday I actually felt totally normal for the first time in months. I didn't feel overstimulated, I didn't feel anxious, I didn't feel fearful; I felt normal. I'm actually starting to WANT to get out of the house, to go drive, to go walk, to just get out - and I have not been feeling that way. I've been extremely reluctant to leave the house. I had a very bad panic attack 3 weeks ago at the nail salon, and that was a huge blow to my confidence. I had driven myself and needed my dad to go pick me up. It's frustrating when you feel like you have zero independence. And it also makes it hard to want to move forward when each time you do you get knocked back. You get sick of it. It's easier to not bother.

I gave into easier for a while. Hid out at home. Started accepting that this is it - this is the new me, this is my new life.

But I really don't want this. It's not acceptable. But fighting is exhausting. Panic attacks that won't go away are exhausting. And as far as people giving me advice all I can say is if you haven't lived it - if you haven't been where I am - then I don't want to hear it. I'm currently only able to relate to women who are in menopause and dealing with anxiety. They know it's not 'just anxiety'. It's a whole bunch of other things too. I've made a couple of new friends who are in the exact same situation and they are the ones I turn to because they get it. They understand exactly what I'm going through and they help me understand. I don't want to delve into the whole list of other symptoms I'm experiencing along side the anxiety; but some of them are bizarre and just as debilitating. This is by far and away one of the worst phases of my life ever. The only thing worse was dealing with the deaths of my little brother and my mom. This is definitely testing my limits.

And now the part I'm afraid to write. I'm feeling better. I am not taking the drugs the PA pushed at me, I trust my hormone guy when he tells me he believes that it's only a matter of getting my hormones balanced. (I was totally fine without antidepressants before my hormones went wonky so to me that makes sense.) I'm anxious to sit down with my primary care physician to discuss everything with him, I really need to find a better solution for my sleep disturbances - right now that's what I'm using the Xanax for, to help me sleep and even that is losing it's effectiveness. I dread bedtime. One of the antidepressants the PA gave me is called Silenor, it's for insomnia but I'm afraid to take it... I want to talk to my primary care doctor first.

So this is where I'm at. I'm extremely anxious to get back to life - back to working, back to driving, back to being a functioning member of the human race. As much as I want to skate, and I do; I dream about it - I honestly do not know when I'll be able to. I'm pretty sure I won't be racing this year, but I'm holding out for next year. I just have to keep being patient...

Finding My Way Back

Today I walked a mile. It took me 36 minutes and I had to stop twice to rest; but I walked a mile. It's been 5 1/2 months since the last time I skated, almost 6 months since the last time I ran - and I still have a long way to go before I can do either of those things again. But I intend to. I am starting over, completely from scratch; as I have lost the majority of my muscle tone and all of my conditioning. 

Since my last post in November, a few things have happened. The first and most important one being my finding a hormone specialist. I saw him at the beginning of December, he took blood work and discussed my symptoms then put me on a compounded bio-identical hormone cream. I've also learned a lot about hormones; our female hormones do a hell of a lot more than just prep the body for making babies or making you feel like a mental bitch before your period - they affect every system in your body. Low hormones can wreak havoc! This is what happened to me. I had too little Estrogen, Progesterone, and Testosterone. My symptoms have been first and foremost the anxiety and panic attacks; insomnia, depression, hair loss, heart palpitations, night sweats, muscle tension (in my neck and back) worsening of digestive issues, irritability, crashing fatigue; and a few other fun ones. I suspect that low hormones are what caused my already slow motility issues in my digestive system to get even slower - they're still not 100% but it's getting better. I can eat almost normally again and have been gradually adding foods back into my diet. I got down to 115 lbs but I think I've gained a few pounds. 

I'm slowly getting better, I have more energy and less anxiety; I do still have some hesitation towards driving (since most of my panic attacks occurred in vehicles) but I know that I'll have to continue to work on that to overcome the fear and get back to driving myself normally. I'm pretty much completely off the Xanax (I just take it to help me sleep but that will be changing after my Dr appt tomorrow.) But the biggest thing is that I feel optimistic. I feel hopeful. I don't feel the crushing despair or the hopeless fear that this is how things are going to be from now on. I refuse to accept that. This is not living. So far I have not needed to take an antidepressant; my hormone doctor is pretty confident that I won't need to. So I'm just taking my thyroid medication, my hormone cream 2x a day, and compounded progesterone orally at night. I also take Vitamin D, digestive enzymes, probiotics, and a multivitamin.

I see my hormone doctor again on the 20th for blood work, possibly another increase in my cream but I should have an idea of what my new normal is by mid-February. I hope to start skating again in April or May. I am going to skate on my rec skates for now. I don't know if I'll do any races this year and that is okay, I just want to regain my independence and my strength. But I'm getting there!