In my previous post ‘What It’s Like To Be A Fat, Sick, Woman In The US – Part 1 Why I Am Speaking Out About My Disabilities‘, I think the title speaks for itself on content. Today I wanted to actually talk about my personal diagnoses and what they may mean for me, as well as other people with the same illnesses, in daily life.
I have only ever sat down and made a list of everything I have been diagnosed with once, and that was quite a few years and diagnoses ago. I found it quite overwhelming at the time due to how many there were at the time. I think that has a lot to do with why I was so hesitant to write this post as well as why it took me so long to write it. If I find it overwhelming and hard to understand it all, how are you suppose to understand it?
Rather than try to go into the complete definition and all of the symptoms of each ailment, I will link everything I can to places you can get more information. I will just talk about what I feel bothers me the most and do my best to talk about the challenges caused by each illness. I have put everything in order of most disruptive of my life to least, or most difficult to deal with to least. Please keep in mind that is completely subjective to my personal experience and my experience does not represent everyone’s experience with an illness.
Fibromyalgia (a.k.a. in the past as fibromyalgia syndrome,fibromyositis, and fibrositis) – This is both the most difficult illness that I deal with and the one of the most difficult to explain to other people. It’s so complicated, and there is so little known about it even by doctors. However, I will do my best to describe what I go through to you.
I have lots of pain. There isn’t a moment of any day that I am not in some sort of pain. And it’s not just one type of pain or even located in one place. One moment I might have a random pain in my foot and the next my shoulders are hurting. Sometimes it might be a stabbing pain and other times it feels like someone has taken super hot rubber band and put it around an arm or leg and tightened till the circulation has been cut off. Sometimes even the lightest touch becomes painful. This one is a unique pain though. The best I have ever been able to describe it is like this; think of that feeling you get when someone runs their nails down a chalkboard, now times that feeling by ten and instead of it being triggered by sound its triggered by touch.
The next biggest thing I have to deal with when it comes to fibromyalgia is what is often referred to as brain fog. This means I often have memory loss, but it’s not like the kind of memory loss you think of with amnesia or Alzheimer patients. With brain fog you don’t actually lose the memory so much as you can’t access it for a brief period of time. For instance you might be in the middle of saying something and then just can’t get a word out. Or maybe you constantly can’t remember people’s names, even the ones you have known for years. But then ten minutes later you will remember what you were about to say. You continually have that feeling of having what you were about to say on the tip of your tongue. I personally find this symptom distressing, especially when dealing with people who haven’t known me for long or don’t know how my illness works. This is because it in a way strip me partially from my identity. I feel like the intelligent and creative mind I have is hidden behind constant pauses with me saying uh I can’t think of the word I was trying to use.
In addition to the pain and brain fog I deal with fatigue, temperature sensitivity, sleep disturbance from the pain, and numerous other issue. There are also many other illnesses that go hand in hand with fibromyalgia as well as some have similar symptoms. It can get really complicated to tell what is causing what. But I will talk more about that as we go.
Chronic Fatigue Syndrome – I think that the name of this makes this sort of deceptive to people. People hear fatigue and focus on that. You can’t imagine how many times I, as well as other people, with chronic fatigue have people ask something like “so your just tired all the time right?”. But it’s more than being tired. I have periods of time that I am so fatigued I literally can’t move to get out of the bed. Or I try to get out of the bed and my whole body will just shake and I can’t function. If I try to push myself past this point it actually triggers my fibromyalgia to get worse and I can get sick and stuck in bed from a flare up. This may last a few hours or a few weeks.
This is one of the illnesses with tricky to distinguish symptoms because I have so many other things wrong with me that may cause fatigue. For example one of the symptoms you can have with fibromyalgia is fatigue, but for me I have found the level of fatigue is very different. And it is very different from the feeling of just being tired from not sleeping. It took me a while to really figure out the differences and what to do to handle my illness.
Chronic Insomnia – I suffer from both Primary and Secondary Insomnia. The difference between Primary and Secondary is that Primary Insomnia does not have any underlying medical reason like pain or sleep apnea that is causing the insomnia, and secondary does. You might wonder how I have both Primary and Secondary, and how I distinguish between them. Well, I have dealt with Primary insomnia since I was a very young child. It wasn’t till I was older and started dealing with pain conditions that I had Secondary Insomnia, and you can very easily tell whether you are awake for no reason or if you are awake because of pain.
If I had made this list ten years ago, maybe even five years ago, insomnia would have been much farther down the list on things that bother me. As I said, I have dealt with this since I was a young child. It was never unusual for me to run on three or four hours of sleep. Sure I felt a little tired at times, but for the most part I usually just dealt with it and no one could ever tell. But in the last five years or so, it’s become increasingly harder and harder to deal with. I just can’t recover from it anymore.
Ruptured Disc (a.k.a. slipped or herniated disc) – When I was 24 years old I woke up one day and I was in immense pain. I was in so much pain I couldn’t walk without assistance, and I was barely able to move my legs. I was told I had a ruptured disc at L5/S1 and that it was one of the biggest ruptures the doctor had ever seen without the disc completely breaking. (I later found out I had another much smaller ruptured disc in my upper back, but this one is the one that causes the majority of my problems).
I was in college and working two-part time jobs, so I had no health insurance and had little money. I was fortunate that I had a chiropractor that was willing to work with me till I figured out how to pay. And I knew the right programs through the hospital to help pay for the expensive tests I needed. I ended up being in this severe of a condition for about six months, though I still have problems with it till this day. And as you will read further in, it caused other problems as well.
During that time I essentially went from someone who was very active to almost a completely sedentary life. Beyond the pain it had numerous ramifications on my health , my mental well-being, and my body. Typically people who have issues with a ruptured disc that are as severe and that last as long as mine have would have surgery. Even if I wanted surgery, it is not an option for me, and you will understand why as you read further.
Sciatica – Sciatica causes pain to radiate from your lower back or buttocks down your leg and to your feet and toes. Where the pain ends has depends on what the cause of the sciatica is and how severe the problem is. It typically is only on one side of the body, however for me due to a hip issue making my ruptured disk move back and forth, the pain can be on either side. But most of the time the pain is on my left side. My sciatica was long lasting. This was one of the many problems caused by the ruptured disc I have.
Endometriosis turned out to be Adenomyosis – You may be far more familiar with Endometriosis, or at least heard of it, than you are with Adenomyosis. There are many similarities and differences between these two conditions. The biggest distinguisher between the two is that with Endometriosis the Endometrial tissue grows outside the uterus and can grow anywhere in the body, and with Adenomyosis the Endometrial tissue grows into the muscular wall of the uterus. Also, since Endometriosis can spread throughout the body, it can never be definitely cured, however Adenomyosis can.
Both conditions can be extremely painful, and because they have so many of the same symptoms and treatments they often are both diagnosed as Endometriosis. And from my understanding, Adenomyosis can only truly be diagnosed when a hysterectomy is performed, which is what happened to me. So for years I was treated as though I had Endometriosis.
From the time my period started at the age of 12 they were heavy(in a way that is not explainable unless you have experienced it), painful, and embarrassing. I tried to find out what was wrong for years and had gotten many other misdiagnosis like PCOS, but I will talk about that more in another post. When I was in my mid 20’s I finally got a diagnosis of Endometriosis, and that finally made sense. After using various treatments on and off for about ten years my symptoms finally got to a place that it was necessary to have a hysterectomy.
As a woman, the word hysterectomy can be quite frightening in and of itself. So I think its needless to say there was a bit of stress I went through over the decision to have a hysterectomy. But I found the support of other women and much-needed information through the website Hyster Sisters, and it really got me through the hardest points. I can now say it is one of the best decisions I have made for my health, and I actually wish I had done it earlier.
Nerve Damage – One of the long-term repercussion of the ruptured discs I have is nerve damage. I have nerve damage of varying degrees in my lower back, down both of my legs, and down my left arm. This means I have varying degrees of numbness in some areas, decreased reflexes, and occasional issues with motor functions.
Migraines – I have had migraines since I was thirteen years old. In the beginning I would have them occasionally. I really just assumed it was going to be like my grandmother who also gets them but she gets them maybe once every other month or so. When she gets them she ends up in the bed for a day or two and then she is better. And in the beginning that is how mine were as well, or because I had a lot to do I would typically push through the pain.
As I got older the migraines got more frequent. By the time I was in my late teens I was having at least two migraines a week and I had started to figure out some of the things that triggered them, but also realized because of the world we live in it is hard to avoid. Again, because of a lack of health care and living in extreme poverty I didn’t actually get the official diagnosis until about the age of 25.
After I was diagnosed I was put on a preventative medicine called Topamax. There are various preventative medicines on the market, not all of them work for everybody. I was fortunate enough to hit a home run with the first one. Topamax does have some pretty heavy side effect, so if you don’t have a well-informed doctor helping you it can be dangerous. It is definitely not the medicine you want to go on and off of on a whim, but side effects are something I will talk about in another post. Lets just say that this was like a miracle drug in many ways for me, but it does have some drawbacks. And once I really got to a point where my headaches were under control that’s when I realized how bad they really were and how much they were really interfering with my life.
Interstitial cystitis (a.k.a. IC, irritable bladder, or painful bladder syndrome) This is one of those odd illnesses that you probably never heard of unless you either have it or have thought you had it at some point. IC is one of those illnesses that are not uncommon to have if you have fibromyalgia or chronic fatigue. I think people are far more familiar with irritable bowel syndrome, or IBS, however it works very similarly just with your bladder instead. However, IC can be more dangerous than IBS. Left unchecked IC can actually cause your bladder to explode. The good news is there are things you can do to help with you bladder. So if you suspect that you have IC, I urge you to see your doctor to have testing done.
Cluster Headaches – I thankfully don’t get these often, I don’t think I would survive if I did. And they would be much further up the list if I did get them often. When I do get them, the pain is intense. I often feel like I have a hot poker pushing through my eyeball. Not much more to say than that.
TMJ Disorder (Temporomandibular Joint Disorder) – This is another disorder that is often associated with fibromyalgia. Don’t get me wrong, you do not have to have fibromyalgia to get TMJ, but if you have fibromyalgia it’s not unusual to have it. TMJ can be caused by a few things, mine caused by the alignment of my jaw not being correct at times.
When that happens some of the things I can start having issues with is opening and shutting my mouth, my jaw clicks when I open and shut my mouth or even chew, pain in the jaw joint, pain in the ear area, and facial pain. Thankfully my TMJ has been reasonably easy to treat as of yet.
- Balsam Of Peru – This is one area of my health I have talked a lot about here on the blog. Since I cover a lot of beauty issues and part of this allergy verges into that arena, it’s kind of relevant. So rather than linking you to an outside source for this one, I have linked to a previous article that I wrote about my allergy. It links to plenty of reference articles. All I will say here is it is one of the most complicated allergies you can have. It causes you to have reactions to hundreds of items in beauty items, food, and medicine. I may have reactions in the form of Contact Dermatitis, blisters in my mouth, or a migraine.
- Dust and Dust Mites – The only time I seem to react to the dust and dust mite allergy is when I am cleaning. I am guessing this is because this is when they are stirred up into the air. I range from having a brief sneezing fit to a full on sinus infection after.
- Mold – This is my most recent diagnosis. I haven’t had any treatments yet or leaned a significant amount about it. I had suspected for a while that I was allergic to mold, but went to get tested because I had read there was a possibility that some people have been misdiagnosed with fibromyalgia who actually have an allergy to mold. However you can also be both allergic to mold and have fibromyalgia. But the symptoms are very similar. This is of course something I am still looking into, so don’t put too much stock into it.
Raynaud’s Disease – This is another one of those odd diseases that you probably haven’t heard of unless you or a loved one has it. It only bothers me about half of the year, but if you live somewhere with a colder climate then you might have issues year round. What happens to people with Raynaud’s Disease can be a little different in each individual, but here is what happens to me. Anytime I am exposed to temperatures below forty degrees my fingers (sometimes my toes and nose as well) start to go numb and they ache. They even start to turn blue, sometimes they turn white. Then as they start to warm back up I get painful tingly sensations, like the sensation you get when a limb falls asleep and you are trying to get the circulation back, but its twice as painful. And the area turns red and swells.
This has honestly happened to me for a long time. I just never knew it was anything but normal until I read an article someone posted on Facebook about this condition a few years ago. I then asked my doctor about it, and then I was diagnosed.
Degenerative Disc Disease – Even though this is called a disease, it’s not a disease in the sense you typically think of a disease. Degenerative Disc Disease is really just the normal breakdown of the disc in our spines that happens as we age. However when it happens at a normal rate it usually doesn’t get referred to as Degenerative Disc Disease, it is only described this way when things happen to cause it prematurely. I was told at the age of 25 that my spine looked like that of a 80 year old woman’s.
There are many things that can cause it or at least contribute to it. This is one of the few cases in my health where being overweight really can be harmful. It does put extra pressure on your spine, so it can contribute to how fast the discs deteriorate. In addition injuries caused from falls or car accidents may cause the start of Degenerative Disc Disease as well as bone spurs.
Arthritis – When I was in third grade my school gym class often had days where we had indoor activities due to weather. One of those many days our gym teacher decided we were going to have relay races. When I was running into what was our home base for the race, I fell and slid in. Had this been outside it would not have been that big of a deal. However, it was a big deal because it happened on a concrete floor. I ended up cracking my knee caps, of course we didn’t know that is what happened at the time. Since we didn’t have insurance my parents held off on taking me to the doctor. To be fair I didn’t complain a lot. I told them it hurt but I wasn’t crying in pain. I don’t think they understood the severity at the time. It ended up being two weeks later when I made it to a doctor. The bone had already started to heal wrong by then. All they could do at that point was give me exercises that would hopefully help. But of course being a kid I didn’t do most of them.
Depression – I think most people suffer from some form of depression at one point or another in their life. But not all depressions are created equal, there are different types and degrees of depression. For some it is a short-term issue and for other people their depression is a lifetime issue. During my teen years I often felt down, but not fully depressed. I think the best reference would be I felt melancholy.
When I got older and my initial major health issues hit, that left me feeling majorly depresses. More than that I had feelings of rage and of morning. The type of depression I was going through, I now know is not unusual for someone who has become newly disabled, but it really scared me. After experiencing years of dealing with a parent who had bipolar disorder and refused to get treated, I didn’t want to be that person. So I went as soon as possible to go get myself a therapist. I got checked and thankfully I do not have bipolar disorder. But I did get a lot of help for what I was feeling at the time.
I wholeheartedly encourage everyone to seek out a mental health professional in a time of crisis or if you just feel like you need someone to talk to. It doesn’t mean you are crazy. It doesn’t mean there is something horribly wrong with you. Your just human, and we all need some help sometimes.
Sialolithiasis (a.k.a. Salivary Duct Stones) – This is once again one of the odd illnesses that I have that you just don’t hear about unless you have it yourself or someone you are very close to. You may even already be thinking what the heck is Salivary Duct Stones(I am pretty sure most of us can’t even say the other name for it, or at least I know I can’t)? Just like you can develop stones in your kidneys or gallbladder, you can also develop stones in saliva ducts. Some people are just more prone to it that others.
Imagine going to sleep one night and everything is fine, the next morning you wake up and notice you have a small knot on your neck. It was so tiny at first it gets dismissed as a large pimple. But throughout the day it increases in size and starts to become tenser to the touch. By the next morning it’s the size of golf ball. Obviously you go to the ER at this point. Now know what this is, and as funny as it sound, it is still not something you would want to play around with as far getting checked out by a doctor. I was lucky and the simplest treatment available worked for me, and has continued to work the other two times it has happened. But this can become serious, especially if it becomes infected.
Chronic Dry Eye – I think everyone understands what Chronic Dry Eye is. What most people don’t know is there are a ton of things that can cause it from other illnesses to medication side effects, or even the way you eye is shaped. My chronic dry eye is a combination of having a very severe keratoconus astigmatism causing the tears to evaporate quickly and my contact dermatitis clogging my tear ducts. The type of treatment used for your Chronic Dry Eye depends upon the what the cause is.
Sleep Walking – Apparently its unusual for adults to sleep walk. So yeah, I know, Its amazing I have something unusual. It actually runs in my family. My father is worse than I am when it comes to sleepwalking. There are various things that can cause sleepwalking in an adult. I actually attempted to find out what is the cause of mine and if there is any way to stop it. However the place I went was not very helpful, and I never found out what was actually causing it. My sleepwalking seems to happen in spurts, so if it ever gets to a place where it is problematic again I may go to another sleep clinic to try to find the cause.
Keloid Scars – Keloids only develop on people who are genetically predisposed to them. They are overgrown scar tissue that cause very massive growths after a cut or scratch. If you remember back to me saying I was not a candidate for surgery on my ruptured disc, this is why. Keloid scars in general just cause cosmetic issues and maybe some itching, however there are exceptions like me not being a candidate for surgery. While most of the scar is topical, there is a small bit under the skin. Because they are so large and dense, and because of where my ruptured disc was located, the thought is that if a keloid were to form after the surgery it could cause worse problems than I already have.
Sebaceous Cyst – Sebaceous cysts are caused by blocked sweat glands or hair follicles. The oil and dirt build up and cause a bump to grow under the skin. Usually they are larger than acne, and they can be anywhere on your body. Typically I would say that these are just bothersome and a cosmetic worry. However, while I don’t get them often, I do get them close to my spine. This seems to cause some discomfort because of the pressure it puts on my spine.
I am not going further with the list and explanations. I didn’t include things that were one time incidents like the kidney stone I dealt with. I also didn’t include things that have long since healed like my torn elbow tendon. Nor did I include things that were chronic, but I have long since figured out what was the cause and put them to rest like my COPD from hAsthma and Chronic Bronchitis. I didn’t even include my many misdiagnosises, unless it was relevant to something I was already talking about, including the ear infections I was constantly diagnosed with as a child. And I am pretty sure there are even a few things that I wanted to talk about that I didn’t.
This post is already way longer than I wanted it to be, but I wanted to talk about as much of my diagnosises as possible. So if you have made it this far and read all about what is wrong with me, your probably for one wondering what any of this has to with being fat, and I promise I am getting to that soon. I actually wanted the next piece in this series to be about how being fat affects you when you go to the doctor and how being disabled affects you. And where the similarities are in those two things. But that may get pushed to the next one. It may all depend on how much information I can get on the upcoming vote on the Trumpcare Bill that Mitch McConnell is trying to force through a vote next month.
And Speaking of the Trumpcare Bill or the amended ACA, I said I would let you know where I stood as far as pre-existing conditions. I mean my title is I Am A Pre-Existing Condition. So here goes, based on the initial list released here are the things I have or have previously had that make me a pre-existing condition.
- Acid Reflux
- Heart Burn
- Kidney Stones
- Menstrual irregularities
- Mental Disorders (they say this includes Anxiety, Bipolar Disorder, Depression, Obsessive Compulsive Disorder, Schizophrenia)
- Sleep Apnea
That is fifteen pre-existing conditions. And they aren’t even for the weird obscure things I have, its the everyday things that so many people have. Things you would expect your insurance company to cover. For the full list of pre-existing conditions you can find them here. (Note: as I awoke this morning, right before my final edit of this post, I read the Trump Care Bill as it currently stands has been scrapped. However, they will be back with another bill soon, they are going to be pushing for the ACA to be done away with completely and starting something new. I will try and have more details on that later)
Tell me in the comments below, what makes you a pre-existing condition? Also let me know if there is something you want me to talk about further regarding health or if there is something specific I haven’t talked about yet about being fat and sick.