I’ve been promising to provide updates on the other diagnoses that I’ve been given. Some of these are recent additions while others have plagued me for some time. I refer to these as the “lesser maladies” as they have been pushed relatively far down on my list of priorities. In comparison to the AS, RA and Crohn’s they are just a nuisance… most of the time. Some of them are more obnoxious than others and this list isn’t complete either. However, to give you an overall view of what my life is like, this will certainly suffice for now.
We’ll start with this one. While it might sound scary, it really isn’t. In truth this is the only one that comes free and clear of symptoms that I worry about. We found the cyst on my left kidney several years ago during an MRI I had done on my lower back. Usually I don’t even know that it is there. Periodically I will have blood tests show that my kidneys are struggling to perform up to par but they are unclear as to whether or not the cyst is involved in this or not. Most likely it has nothing to do with the cyst; instead they speculate that it has more to do with the autoimmune stuff going on. So cyst, schmyst, right? I say, “Don’t borrow troubles from your kidney cyst!”
Scoliosis (Very Slight)
I broke my foot a couple of years ago in one of my classic “graceful Stina” moves. Like any professional klutz, I decided to fall down my stairs in style. It was glamorous, oh yes, a full on head over heals, flip flop move that would have earned a ten had judges been scoring for sure! Long story short, the orthopedic surgeon was examining me one day and said, “You know you have scoliosis, right?” Wait, no, what? Huh? Please repeat? “Oh, don’t worry; it is very, very slight.” I just looked at him and said, “Ok, well I kind of have a lot going on with my health so can you just tell me if I need to do anything about it?” He said no and that was good enough for me. The only down side to this one is that it often contributes to the lower back and hip pain from the AS. Compared to everything else this one is barely on my radar. As for my foot, well it healed quite nicely but not by growing bone. Ironically I can grow extra bone where it shouldn’t be in all of my major joints thanks to the AS but my poor sad little bones in my feet couldn’t bring themselves to do it. Silly feet.
Wrap your mouth around that one! I’ve had this one all my life but never has anyone taken the time to notice it and put a name to it until recently. This syndrome was actually instrumental in diagnosing the two types of arthritis that I have. Let’s look at a fun photo for this one.
Here I am clearly enjoying the Dumbo ride much more than I should. My Dad, behind me, and I are REALLY into it! Now look closely, no not at the ridiculous facial expression, look at my arms. Specifically note my elbows. Do you see that odd angle? I believe the picture will speak for itself. This illustrates one of the tell-tale signs of this syndrome. I am double jointed. I can bend my elbows, knees, fingers, thumbs, and shoulders in all kinds of funny ways. I used to be able to touch my palms to the floor and pop my hips out joint. My joints were so loose that sometimes I would go to cock a hip while standing in line somewhere and it would completely give way leaving me clamoring to regain my balance. As the years progressed I retained my flexibility in my knees and elbows but my shoulders and hips have seized up completely. This is one of the clues my Rheumy used when finding the RA and AS. He told me that in someone with Ehlers-Danlos the flexibility should remain throughout life. Well, what can I say, I’m an odd ball! I’m either so flexible I can’t keep it together or I’m so stiff I can barely move. Other than that this one has proven more entertaining than harmful so I’ll keep it, I guess…
This is an interesting one. As you may have guessed by now I don’t have the best genetics in my background. While none of my family has the plethora of conditions that I do all at once, they do suffer from some of these things in varying degrees. The difference is that they didn’t get the smorgasbord that I seem to have been blessed with. My parents and I joke that I got the worst genes from both families, en masse! Type 2 Diabetes runs rampant on my mother’s side of the family. Her father passed away when she was 17 and her older sister died just this past year from complications of diabetes. Her two older brothers also have it, yet somehow my Mom has escaped this one in so far except that she is considered prediabetic. Needless to say, it runs in the genetics so of course I’m going to somehow pick up on it. I don’t have diabetes but they tell me I’m also prediabetic. For years I struggled with my weight doing everything I could to keep it under control. It was always an uphill battle, one that I would alternately win and loose depending on my body’s ability to process insulin. Now through the quirk of fate I call Crohn’s I have no problem keeping my weight down. During a Crohn’s flare it is everything I can do to keep my weight UP to a healthy range. I know I say this a lot, but seriously…. the irony kills me sometimes!!! What this means for me now is that during a Crohn’s flare it is really difficult to control my blood sugar. Being insulin resistant leaves me prone to hypoglycemia or low blood sugar. When my stomach and I are not getting along I will often have to force food down in an attempt to avoid the dizziness and fainting that comes with low blood sugar. The good news about being insulin resistant is that lifestyle changes like being active, eating healthy, and keeping your weight down can help. The bad news is that some of my other diagnoses prevent me from being able to make those lifestyle changes in earnest. The thing that they don’t tell you is that having too much insulin in your body makes it extremely difficult to manage your weight and even after I adjusted my lifestyle my Endocrinologist and I discovered that my body didn’t respond as it should. I know, it is surprising that my body wouldn’t respond appropriately, go figure! So I have to take medication that is meant for diabetics to control the insulin levels in my body. Add to that the fact that my Rheumy has to put me on Prednisone, which adversely affects your blood sugar, to control the autoimmune flares and I’m on a constant blood sugar roller coaster. Still, if I work really hard at forcing food in when I have to and avoiding food when the Crohn’s flares are under control then I guess you could say I’ve got it handled?
I have had strange skin conditions ever since I can remember. As a little girl I developed odd rashes that would burn, itch, and peel like crazy. This is another condition brought on by my over-zealous immune system. Luckily it has been in remission, thanks to my fabulous dermatologist, for several years now. I may get a small patch here or there but it really hasn’t given me any troubles in quite some time. Quick, everybody knock on wood for me, do it… do it now! Thank you. I’m glad I haven’t had a really bad flare up of this; it can be disfiguring and painful. I’m not in the mood to tempt fate further so I’ll let you read up on your own via the link above.
OK, here is another syndrome which requires some “potty talk”. Please excuse me, but it must be said that between this one and the Crohn’s I feel as if I never leave the loo. I feel like I have to urinate all the time. Even while sitting here I can feel the pressure building. It builds and builds until I feel as if my teeth are going to float right out of my face, then when I seek relief a tiny trickle comes out and I want to cry. I sit there thinking, “Are you serious? I wanted a bigger payoff for all of that pain and pressure!” All I have to say is that there are days when I think I might give my right eye for a good wiz! (So sorry, I just had to!)
Last, but certainly not least, migraines. I actually debated on whether or not to list this one under “lesser maladies” because anyone who suffers from frequent migraines can tell you, they are pure hell. I finally settled on including them in this post because if I can keep my stress levels at a minimum I can reduce the frequency of the attacks. This is what they are like for me. I’ll be fine one minute and the next I go blind in one eye. I cannot see anything but alternate darkness and strange flashes of light in just one eye. This can last anywhere from minutes to hours, I just have to wait it out. Once my vision begins to return I start to feel a numbing sensation that travels throughout that same side of my body. It starts at the top of my head and travels down to each of my fingers and toes. It even makes my tongue numb on one side. This usually only lasts several minutes at most until the numbness settles into my face and I can feel that side of my face begin to droop. After I loose muscle control in my face I feel nauseous. Sometimes I can hang onto my stomach contents and sometimes I can’t, it just depends. Then the pain arrives. Migraine pain is some of the most excruciating pain I have ever experienced. At times it is so bad that if I haven’t tossed my cookies during the nausea stage, I’m sure to do it at this point due to the pain. These headaches usually last the entire day and well into the next few days. Once the worst of the pain is over you’re left with what I refer to as a “migraine hangover.” Your head just feels achy and swimmy for days afterward. The struggle I have with these is that they can trigger a Meniere’s attack as well. So once I’ve survived the headache I’m left with severe vertigo instead. If I’m really lucky, which has happened several times, I get a “double migraine” so that once the pain starts on the originating side of my head, the symptoms of blindness and numbing start on the opposite side of my brain. When this happens I have no choice but to head to the ER for pain management. There is nothing that helps! I hate this so much I can’t even come up with a snide comment to relieve the tension. Ugh!
So there you have it. The final pieces of the puzzle I’ve been promising to blog about. I always say “go big or go home” so I guess that applies to my health as well. I was telling a friend the other day that now when a Dr tells me I have some odd disease or disorder I usually say, “Well these are the other things I’m dealing with so in comparison where should this rate on my radar of things to stress over?” Usually they just stare at me wide-eyed for a few minutes before they’re even able to respond. One day my body and I will learn to live in harmony. I’ve learned that keeping my stress levels to a minimum is something that I must do in order to survive. This means a change in perspective that is much easier said than done. Over the past several years I’ve learned a lot about what it means to truly let it all go and give it over to a loving Heavenly Father. He knows what challenges I face. Without my faith I would have thrown in the towel long ago. I won’t lie, there are days when that is precisely what I want to do but I resist the urge because I couldn’t survive without faith that all things are as they should be.
On another note, I wanted to say thank you all for taking time to read my blog. I had no idea that there would be so many interested in my silly little life. I appreciate you all for the kind words, your positive thoughts, and your prayers!