I Have A Chronic Illness…

Blogs Kristen

A lot of you guys already know that I have had fibromyalgia diagnosed when I was about 19-21 years old (somewhere around there, memory isn’t the greatest these days). So that is roughly 22 years of random, insane symptoms of an illness that no one understands, knows how or why anyone has it, how to get better, or really what it is at all other than something that causes a lot of pain and brain fog. So, I had plenty of time to get used to it. And I did good with it for a long time.

Then… wow, it hit me hard. It WAS NOT fibro. This was different. I had been feeling these “strange, different issues” for most of my life, but now it went haywire. Everything was going nuts and I felt like I was slowly falling to pieces. And it hurt more than anything Fibromyalgia ever threw at me. ALL THE TIME. No breaks. Suddenly, I could barely walk. My hips partially dislocate themselves as I take steps, and clunk around as I move. So do my shoulders, wrists, thumbs, knees and ankles. One ankle is completely falling apart. I must brace it just to be able to put weight on it without my ankle and arch collapsing to nothing. It’s beyond a sprain, it’s way beyond a rolling ankle, but it’s not broken. It’s the Superior Peroneal Ligament that is just not holding together anymore. It’s stretched out like an old rubber band that has lost it’s elasticity. And that is the ligament that holds your ankle bones in place and your foot’s tendons in place. That leads to inability to walk and severe tendonitis in my right foot because those tendons aren’t being held in the right place any longer and are thus flopping all around inside the ankle, catching and rubbing on who knows what inside there, getting all angry and inflamed and damaged. So much so that I can no longer wear shoes at all on my right foot unless it’s a loose house slipper. It’s winter right now, by the way, and VERY COLD, so that means I can’t leave the house until the weather warms up. Yay. Housebound. Just how I wanted to spend my favorite season…

I love winter. Mostly because I am highly intolerant to heat. Anything over 70 degrees and I start getting heat exhaustion. The hotter it is, the faster it comes on until I pass out.My husband is intolerant to cold. Go figure… opposites DO attract! 🙂

And, even with the colder weather, I’ve started getting faint when I am on my feet. Oh great, another weird thing happening. So yeah, I had to go to the doctor about all of this. Many times. I had to get vial upon vial upon vial of blood taken… it would have been easier if they had just taken a full pint or two, then separated them into vials after the needle in my skin part was over. But, I digress… I had a lot of blood work done, I had X-Rays taken, I had an MRI on my brain. I learned A LOT. And I’m still in the midst of diagnosing exactly what is happening. There are steps to something this complex.

To start off, I do still have Fibromyalgia tender points. So the guess is that I do have it. But I also have other stuff going on. I have been given a preliminary diagnosis of Ehlers-Danlos Syndrome, Type 3. This is the hypermobility type of the illness, but there are actually 13 types. The other types are diagnosed through genetic testing, so I am now waiting on genome sequencing to determine if I actually have one of the other 12 types. There has been no gene yet identified as being responsible for Type 3, though some are under intense scrutiny and research. So, if none of the other types are present in my genome, the Type 3 diagnosis will stand.

Ehlers-Danlos Syndrome is an inherited genetic disorder that changes the way my body produces collagen. Collagen is basically the glue that holds your cells where they are supposed to be in your body and provides the elasticity of your skin, muscles, tendons and ligaments, arteries and veins, etc. It is what keeps us together in one piece and with all of our pieces in the right place, working as they should. With faulty collagen, that doesn’t happen as well. Joints dislocate randomly, skin becomes very elastic and translucent or very thin and delicate! Blood vessels no longer behave the way they should to protect your body from the changes of posture and stance, sometimes they even spontaneously rupture. The different types of Ehlers-Danlos Syndrome (EDS) are there to show how different genes control types of collagen present in different parts of the body and those with different types will have different symptoms than others. Someone with perodental EDS will have massive issues in their mouth and with their teeth, whereas someone with vascular EDS will have more problems with their cardiovascular system. Even so, all EDS sufferers usually share some common symptoms (but not always!) including abnormal skin (velvety, stretchy, translucent and/or paper thin), joint hypermobility, chronic mobility problems, spine problems, cranio-cervical instability, the list goes on and on. Some lucky few of us (can you taste the sarcasm there?) have gene variants present for more than one type at once. So, yes, someone CAN have multiple types and suffer multiple system symptoms and problems at the same time. It’s all in the genes, so you can have a variant in your COL51A, COL31A and others at the same time. You CAN have multiple genetic illnesses at the same time, and variations of Ehlers-Danlos Syndrome are a cluster of similar, yet somewhat separate genetic illnesses that all deal with variations of the genes responsible for the production of collagen in the body.

I also have a meningioma. This is a tumor growth of the lining that covers the brain and spinal cord. It’s a small little growth that sits at the midline between the two hemispheres, right above my left eye socket but towards the center. I can kinda feel it sometimes, and that is FREAKY. I worry myself to death that it is growing or malignant, though I know that most of them are benign and slow growing. Even so, I am waiting for a followup for a second opinion with the Virginia Brain and Spine Institute and they should order a followup MRI as well, to see if it is growing. This is a pic of my MRI that I had in October 2018. I’ll know more when I get followup imaging done.

I also had an X-Ray of my spine, from head to tail… it’s pretty screwed for a lady who doesn’t have osteoporosis and is under 80 years old. I have spurs everywhere, skeletal intrusion in my cervical spine causing cord and nerve compression and two left-leaning scoliosis places, one in the middle spine, one in lumbar. But from what I have been learning, that’s nothing uncommon in people with Ehlers-Danlos Syndrome. The discs in the spine rely on collagen to keep them healthy and spongy to cushion your vertebrae. When your body doesn’t make collagen right, the discs lose their helpfulness and your spine ends up like an aged spine way younger than it should. It’s called Spinal Degeneration, Disc Degenerative Disease, Spondylosis and a few other names that I can’t recall right now. Many of us have trouble getting this issue in particular diagnosed earlier in life, or before our genetic diagnosis, because we are “simply too young to have age-related spinal degeneration”. I can’t tell you how many times I was told that in my life, only to have ONE doctor finally listen and decide that it wouldn’t hurt anything to order spine imaging. After all, he must have thought that at least it would pacify me so I would stop complaining about it. Lo and behold, there are significant spinal problems even down to having arthritis in my spine. But, still, I considered the discovery a win. How? Because now there’s proof that I wasn’t being a crazed hypochondriac about my back pain and that triggered my doctors to be more inclined to actually listen to my other complaints. So yeah, my back is junk and it’s a win. Now at least I can be treated for it instead of leaving it to get worse and worse.

I don’t know if my memory problems, nerve problems and brain fog are caused by the EDS, the meningioma or the nerve and cord compression in my neck, but I am figuring that I will find out soon. I hope I find out while I still have enough mental capacity to do something about it!

So now I’m only 44 years old, soon to be 45. I have a 9-year-old kid. I should be a typical, healthy and happy on-the-go type (I used to be, after all!) And instead, I am using a cane to walk in my house and any time I go out… when I can manage to wear shoes and leave the house at all. I’m looking at the very real possibility that I will be in a wheelchair sometime in the future. Heck, I would probably benefit from one right now just so I can enjoy life when I go out instead of having every step I take put me in excruciating pain. Now, it’s getting to be all about quality of life. I know this is never going to go away and it is never going to get better. I am now looking at things that I CAN do something about, like staying on top of the meningioma and making sure it doesn’t kill me, instead of worrying and freaking out about things that won’t go away EVER. Like my collagen. I can strengthen muscles to try to take the load off of my tendons a little bit but it only helps, not cures.

It’s a good thing I’m a fighter.

Now the task is to handle the genetic testing and to get my son tested to see if he inherited it. He has a lot of the same signs and symptoms that I had when I was young that I always thought were normal until I learned they aren’t. Go figure! I’ll keep my blog updated as often as I can with this ongoing issue.

Another issue is going to be testing for POTS. Post orthostatic tachycardia syndrome. I have almost all of the symptoms, but haven’t been diagnosed yet. It is a common condition that exists alongside EDS, and since I have all of the symptoms, that is a test that I will be going through sooner or later. This is so complex, each individual test has to be taken one at a time, each in their own time, and as I can afford all of the doctor and specialist and lab co-payments.

Please remember when you see someone parking in a handicap spot who has a tag or placard, but doesn’t LOOK disabled, or someone in a wheelchair who actually CAN walk, but has chosen to swallow their pride and not walk, remember that not all illnesses are visible, not all pain is printed on the outside for all to see, and the choices to utilize these services for disabled people is not easy to make for those of us with invisible illnesses. We get a LOT of grief from random people who have no business putting their noses in ours, through nothing more than “you don’t LOOK sick”. It’s a very hard call for someone with an invisible illness to admit that they need those aids, mostly because we get such a hard time from abled people about it. So when we do make that decision, when you see someone who has made that tough call in their life, applaud their strength of will and character, offer to hold the door or whatever you would do, like you would for anyone else who is disabled. Those tags and placards don’t come in cereal boxes or get bought online, they are hard to get and if someone has one, they have suffered through their right to have it and that right should be respected. Whatever you do, be kind. And remember that your well-intended comments may not always be taken with grace. Yoga, exercise, and diet aren’t going to fix what is wrong with us and saying so feels like an insult to some folks. I know that the last thing you want to do is insult someone or hurt their feelings, so ask before you offer your advice. That person struggling in their wheelchair may have just left a workout session with their physical therapist…

If you are in good health, and your family is in good health, rejoice and celebrate that good fortune! Appreciate every smile, every single simple little thing that I can’t. Like walking, running and playing with your kids, standing up without aid and without fainting, going to work every day like a normal person, shopping for groceries without pain, exhaustion and the danger of passing out while you stand in checkout lines. ENJOY LIFE and ENJOY HEALTH. They are precious.