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Medical Mystery Tour

by | Sep 14, 2015 | Anger, Anxiety, Diverticulitis and Diverticulosis, Endometriosis, Feelings, Hope, Interstitial Cystitis, Loneliness, Medical Mystery Tour, Pain And Pain Disorders, Polycystic Ovarian Syndrome, Pregnancy, Stress, Trauma | 18 comments

Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.

This is her story:

Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.

Any other time I go to the doctor? Well… That’s an entirely different story all together.

Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain.  I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.

Imagine my dismay to realize that it was going to start all over again.

I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. :-P ) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.

The day before Valentine’s Day, I decided to add passing out to the mix.

After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.

I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)

Oh! But wait! It seems my body decided to throw another curve ball into the mix!

During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.

To me, it was easier to deal with the judgment of  being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.

Except in June, I found out that I managed to get myself knocked up.

I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.

I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.

And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)

I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.

So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.

I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part.  While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?

Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told  be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that. :-P

Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?

Or am I really alone in this?

My Lyme Disease Story Part II

by | Sep 13, 2015 | Anxiety, Bacterial Infectious Diseases, Caregiver, Chronic Illness, Fear, Grief, Help For Grief And Grieving, How To Cope With A Suicide, How To Help A Friend With Chronic Illness, Infectious Diseases, Invisible Illness, Lyme Disease, Stress, Suicide, Trauma | 3 comments

Click here for Part I

Everyday I feel like I am going to die.

It’s pretty difficult to sleep at night when you are afraid that you won’t wake up in the morning, leaving your 18 month old motherless. And in the *capable* hands of your husband who, when it’s his night to make dinner, relies on boxed Mac and Cheese. Without me he’d probably revert back to Kraft, leaving organic Annie’s behind.

Neurologic disorders are their own beast, I think. The symptoms are literally all in your head, and yet you feel them everywhere. My feet tingle. Sometimes I can’t stand the feeling of pants on my legs because my nerves are hyper sensitive. My hands go completely numb some nights. Just a minute ago I was pretty sure that my tongue had stopped working and that maybe I was having a crazy allergic reaction. When I touch the skin of another person, sometimes it feels like it’s burning.

I’ve been to the ER too many times this last year. At first it was chest pain, which was treated with Ativan. Turns out I have chest wall inflammation. Advil was much more helpful than the anxiety drugs, but I’m a woman so must be crazy. Then I went to a doctor for what felt like the flu in the height of the swine flu outbreak. She listened to my heart, which had become tachycardic. She thought I was having a thyroid storm. Nope. Just Lyme disease. (It would have been helpful to know it was Lyme then.)

Lyme is also extra special because it causes psychiatric changes. Remember IRENE from the Real World? Don’t you wish you were my husband? I swing between uncontrollable anger to lying on the floor thinking about death. Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn’t figure out why there were links to suicide prevention lines. I get it now.

And then there’s the memory deficits. I’ve always had a really sharp memory. My mom hates me for it. Pray that your children don’t remember every phrase you ever uttered to them! I’m also a word freak and can kick some serious Scrabble ass. But now, I have trouble remembering the word for “countertop” (yep, happened the other day). I don’t know how to spell things. And I often just stop in the middle of a conversation unsure of what we were talking about or what I was saying or what I want to say next.

My stomach hurts. My knees ache. I lose my sense of taste sometimes. I can’t sleep, and yet I’m profoundly exhausted. I get night sweats. Bright lights bother me. And low lights bother me even more. I feel jittery and can’t sit still. But I’m too tired and sore to move. And I constantly feel like I’ve just gotten off a Tilt-A-Whirl, that’s how dizzy I am.

This is my life. I don’t tell you this for sympathy. I tell you it because it’s real. And frankly it scares the shit out of me.

Self-Depreciation

by | Sep 12, 2015 | Anger, Anxiety, Coping With Depression, Denial, Depression, Dermatillomania, Eating Disorders, Fear, Guilt, How To Help A Loved One Who Self-Injures, How To Help With Low Self-Esteem, Impulse Control Disorders, Major Depressive Disorder, Mental Illness Stigma, Self Injury, Self Loathing, Self-Esteem, Stress, Trauma, Trichotillomania | 7 comments

Prankster, my heart goes out to you. I wish that I could wrap you up in a big hug so that you knew that you were loved. Because you are so loved. You are worth everything. I know that telling you that you need to stop won’t help and will further reinforce all that you do to yourself, so I won’t, but I am reading what you don’t say here, and it breaks my heart. You are worth saving. You can fight your dragon and you can win. Someday you will win.

We will be here waiting to celebrate when you do.

Much, much love,

Aunt Becky

I’m a sucker for it. And I could speculate about all the things that have caused it. My childhood wasn’t great. I’ve dealt with depression and all the shit it brings. I’m impulsive… but I have this feeling, deep down inside, that it’s just the way I’m wired.

The first time it happened I was 14, angry and frustrated and it just made sense. The scissors were right there… and just like that, an addiction was born. I was a cutter. I self-injured.

Of course, 14 year-olds aren’t the most logical thinkers, so I got ‘caught’. We did the whole therapy deal with a crappy counselor and I was expected to stop immediately, so I did.

But I wasn’t stupid. Since the age of 15, I’ve been dealing with an eating disorder. I’ve seen 2 shrinks since the first, and neither know about my eating disorder.

As with all addictions, I’ll never be cured. I never truly stopped, but my parents like to think I did, so I let them. I just got better at hiding it.

While I don’t cut nearly as often as I use to, I picked up a nice little friend, named trichotillomania (self-pulling of hair). It’s so great [sarcasm].

This would be one reason I think it’s instilled in me, I don’t want to give it up. It’s mine, all mine, and I don’t have to share it with anyone, which feels great.

So, maybe the day will come and I’ll be ready to give up the ghost. And if it does, I’ll come back, and I’ll let all of you know.

My Lyme Disease Story – Part I

by | Sep 12, 2015 | Anger, Anxiety, Bacterial Infectious Diseases, Caregiver, Chronic Illness, Fear, How To Help A Friend With Chronic Illness, Infectious Diseases, Invisible Illness, Loneliness, Lyme Disease, Sadness, Shame, Stress, Trauma | 3 comments

I was bitten by a tick when I was ten. It’s the only tick bite I remember, though a large number of those with Lyme don’t remember a tick bite. There’s no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it’s been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you’ve been given a taste of that forbidden formula).

And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.

I had Kellen and went into my six week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot.

Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn’t move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment.

It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn’t want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.

The good news is that it wasn’t a stroke or brain cancer, though the way the doctor told me it was *just* Bell’s Palsy made it seem so benign as though I hadn’t just lost full functionality of one side of my face and now looked like this:

“Are you sure nothing else is wrong?” I asked the ER doc. I just couldn’t fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell’s Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then as Bell’s Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)

Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of the fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, “I can’t.” We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn’t sit down at all because I felt so antsy and uncomfortable. It was one of the only times I’ve ever had the urge to scrub a floor. It’s unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It’s been posited that SSRIs may actually exacerbate Lyme symptoms in some people (many also find them helpful).

That was also the day that the dizziness set in, and it’s kept a firm hold on me for over a year. I spent the entire trip in San Diego sleeping. When I wasn’t, I was scared. I truly thought I was going to die but was afraid of going to the ER because I didn’t want them to think I was crazy. I wish I had gone while in California.

I made a deal with myself that I would make an appointment with my neurologist in January if I was still sick after Christmas. I scheduled an appointment. That week I woke up and felt fine, nearly canceling the appointment to see the doctor. At that point being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the doctor It would be the first of many cycles but also the clue that led another doctor to Lyme disease nine months later.

At first I was diagnosed with Benign Positional Vertigo, which is caused by ear crystals shaking loose. The test for this is tilting your head back to see if it gets worse. It did. But the exercises didn’t work. So an MRI was ordered. While I passed the muscle tests with the neurologist and chiropractor I was seeing, I drop things a lot (more than normal), so I worried a lot about MS, especially because I was told that mid to late 20s was typical for age of onset. With every click on the MRI machine I just hoped that I didn’t have MS and if I did that the test showed it. I didn’t want to be sick, but I also wanted an answer to why I felt so badly.

Click here for Part II.

Healing

by | Sep 11, 2015 | Abuse, Anger, Coping With Domestic Abuse, Domestic Abuse, Fear, Intimate Partner Rape, Jealousy, Self-Esteem, Trust, Violence | 0 comments

So, I’ve just realized that I’ve been in an emotional, physical, and verbally abusive relationship for five years. I am in the process of healing.

You would think that healing comes easily. It doesn’t. Every day seems like a struggle. Sometimes I hate myself for the person that I have become: fragile, weak, heartbroken, depressed. I thought that I loved this man. He told me that he loved me, and I told him that I loved him, but everything changed so fast. The gentle, sweet talking man that I thought I knew turned out to be an angry, jealous, bitter abuser. I can’t help but think about the chances that I had to walk away.

I met him on a Christian blog. I discovered my spiritual side wanted to learn more about the Christian faith. He sent me a friend request, and I accepted it. I invited this man into my life because I thought that he was a fellow Christian with good intentions. Being 19 at the time, with many problems in my personal life, I realize that I was also naive. I did not think about the repercussions of pouring out my heart to a complete stranger.

Not long after we had met, he started to tell me that he loved me. Soon after, I gave him my phone number. I thought that I could trust him, and I gave him my address. Over time, he would send me gifts: candy, clothes, money, and other things. He told me that I was the only one, different from the other girls that he met. He made me feel loved, in his eyes I was perfect.

The more we got to know each other, the more serious we got. Since the relationship was long distance, we kept in touch with each as much as possible, maybe a little bit too much. We would literally stay on the phone with each other for hours. What I thought was a sign of care was nothing more than his way of control. If I did not return his phone calls, he would text me constantly. When ever we got into an argument, and I would ignore him, he would threaten to commit suicide.

Months into the relationship, I noticed that things were beginning to take a turn for the worse, but since I was going through a tough time in my life, and I needed someone to turn to, I chose to ignore the signs. A began to notice his jealousy, especially after I would tell him about my male friends. He punished for my honesty when I was only trying to establish trust. He started degrading me and calling me names. I thought that this was normal and forgave him after. He then started to send me pictures of himself, some sexual in nature. I was uncomfortable with this, but I did not tell him. I thought that sex would bring us closer since we were so far apart.

After seven months of communicating by phone, email, and text, I took a bus to meet him in Mississippi. I was scared, but felt that this would show how much I really wanted this relationship to turn out. When I saw him for the first time, I felt numb. I didn’t feel attracted to him, but did my best to make him feel loved. When I got to his house, I was nervous. His mom didn’t know I was there and I didn’t know anyone. We ended up having sex that first night. I didn’t enjoy it, but I felt like this would make everything official.

After two weeks, I returned home. I moved out of my parents house and stayed with my grandparents. We continued to stay in touch and we told each other how we wish that we could be together. One day, after an argument with his mother, he decided that he wanted to leave home. He wanted to come live with me even after I told him that I was not ready. He left anyway. I was scared at the fact that this man would come to my home even after I said no. I was worried about what my family would think.

When he got to South Carolina, I met him at the hotel to help him settle. I began to feel responsible for his homelessness and I stayed at the hotel with him. When he ran out of money, he asked if he could stay with me. As worried as I was, I let him.

Since that day, my life has never been the same. I live with a predator. He’s a completely different man from the man that I thought I knew. He accuses me of sleeping around. He’s looked through my phones, and even broken them. He destroys things that have value to me.

I’ve been sexually abused by this man. He touches me inappropriately without my permission. I’ve been physically abused: punched, kicked, slapped, bruised. I’ve called the police on him three times. He’s been arrested once.

I became pregnant by this man. The abuse did not stop after I got pregnant. After my baby was born, he started to isolate himself from me even more.

I wanted to share this story because I wanted to let any one who has been abused know that you can heal. I had to get on my knees and pray for healing. I accepted Jesus Christ into my life so that I could be saved. I know that Jesus loves me, and you, no matter what anyone else says. When we know that we are loved, we begin to love ourselves: then we can heal.