Whining Alert: This is my reality

I know this will come out as whining, and if my mother read this she would be sure to remind me that I am not the only one to suffer pain, that other people suffer much more than I am, but it is not other people’s pain that I deal with in the middle of the night when I am all alone, desperately wishing for sleep so I can recover enough to go about my plans for the next day and get all the work done that has to be accomplished.

My reality is that often when I go to bed I cannot sleep for the pain keeps me awake. I took my Lyrica, but the new dose of “the first FDA approved drug for fibromyalgia” hasn’t gotten into my blood stream enough yet to have done much good. So I am back at my keyboard, writing into the little box that pulls words out of my head and through my fingers, because it hurts too much to lie down in an attempt to sleep.

Do I take an extra dose of my arthritis medication Mobic now to chase away the pain? I do not know if it will help with the facial pain the doctor has yet to identify, even after medications and a facial X-Ray. The sinuses look fine, but still I am getting this sharp pain up top of the cheekbone, right below the eye, and the pain switches sides of the face from day to day. He didn’t think that it could be arthritis of my joints in the face, like my husband postulated, but I do not know what else it could be, unless it is the facial pain described on fibromyalgia websites. If so, I am pretty much screwed and can only hope the Lyrica does something for it.

I hate tests. Medical tests, that is, but I hate the ones in school, too. Mostly I hate tests because they cost so much money and usually we do not find anything that explains what is going on with my body. The last battery of test run was on a pain I have in my abdomen–a pain that I mostly had forgotten about because I am so used to having that pain and other pains. If the nurse hadn’t seen me struggle to get out of the waiting room chair in the middle of a flare-up and noticed that I was holding my side, I doubt I would have said anything to the doctor, for that wasn’t the reason I was there to see him and I thought it was nothing. I had pain like this for years before they finally found my gall stones and took my gall bladder, so I am used to having pain that doctors tell me is just in my head or of some unknown origin.

However, when he went to check me out and pressed on my body, I came close to punching the man because it hurt so much. I had to look down at my abdomen/stomach region to see if it was completely black and blue, for that is what the intense pain felt like. The doctor thinks it could be scarring from surgeries I had there–and there were a few, from three laparoscopies–two for female reasons and another to take out the gall bladder, and my gastric bypass was in that region as well.

So, it may really be nothing that we can do anything about, even if the blood tests or the CAT scan he had run on me shows something. I still haven’t done one test, an Upper GI with Air Contrast–I hate 12 hr. fasts, and I’m tired of doing expensive tests for nothing. if he still wants me to do it I will.

A urine test did come up with an infection, but I doubt that is everything that is wrong. Maybe that and the scarring together? What is really funny is that when the nurse called me to ask if I had any burning or frequency, I said that it was my normal state. She thought I meant that it was normal for my results to come out like that, and that there was nothing wrong. No–it’s normal for me to feel irritation in that region and to keep having to run to the bathroom more than other people, so no I didn’t notice anything was wrong with me for it is just another part of my life to have bladder problems to the point that an infection completely slipped by me.

I have an interesting little condition called interstitial cystitis–one of the myriad of identified ailments that plague my body–which one of the definitions my doctor gave as being my having a “small and angry bladder.” Of course, my history buff husband had to quip, “So, you mean her bladder has a Napoleon complex!” The doctor said she never quite heard it described that way. Other history buffs out there may appreciate what she is trying to convey through my husband’s colorful example. One of the lovely little details about this condition, though, is that it makes me more inclined to have urinary tract infections, which is why they are so common that I just get used to them as just another part of my reality.

I wonder if the warm feeling all over me now, kind of dizzy like, comes from the UTI? I forget the symptoms, but it does seem to be coming from the lower quadrant. Lets check what Google has to say about UTI symptoms:

About.com–Urinary Tract Infections

Also, All About UTI.com had some really helpful advice on their symptoms page:

Chills and fever
People who have a simple infection of the lower urinary tract usually do not have chills and fever. Having chills and fever suggests a more serious infection, such as a kidney infection (pyelonephritis) or bacteremia, in which bacteria from an infection have entered the bloodstream and are circulating through the body with the blood.

 

Alert: A fever may be the only symptom of a urinary tract infection in an elderly person and the only symptom of a kidney infection in a child. See your doctor to be sure it’s a urinary tract infection. Your symptoms could have another cause.

Oh, how wonderful. Something else for me to be concerned about. Just ducky! It could be just that I am tired that I feel so off. Who knows? I do see my doctor on Monday, and he will take care of me then. And I am on antibiotics, and I will raid my fridge to see if that bottle of Cranberry juice is still potent, and if the Cranberry supplements I bought during another infection have expired.

Penn State has a good page on Urinary Tract Infections.

What have I been diagnosed with so far, besides the fibromyalgia and the interstitial cystitis? Osteoarthritis (not rheumatoid yet, but we keep checking for it); neuropathy; carpal tunnel; hypothyroidism as a result of having my thyroid removed through radioactive iodine to treat the Graves’ Disease I had before. I take high blood pressure medication (Inderal) to work with the Synthroid hormone to stop chest palpitations; I have dry eyes caused by the fibromyalgia that I am supposed to take a prescription eye drop for called Restasis, but I keep forgetting to do it amongst all the other medications; I have my Prozac for the depression that comes with living with all these chronic conditions; Elmiron and Ditropan XL for the interstitial cystitis; Nexium for the GERD that came as a result of all sorts of problems; and I should be taking Slow FE to keep my Iron levels in line; and I get a B12 shot every month because after my gastric bypass my body does not absorb the vitamins it should; and Seasonele to help with my serious menstrual and hormonal issues because I had a tubal ligation to prevent pregnancy because my body couldn’t handle another pregnancy and I panicked one time I had to do a urine pregnancy test before I had a neuroma removed from a foot (had both feet done, and both hands operated on for carpal tunnel) terrified I was pregnant, so I was back in the hospital a few weeks later, still on crutches, for the other surgery. Let’s just say it is bad enough that the nurses at Altoona Hospital’s anesthesia department knew me because I had so many surgeries there, one of the rotating doctors actually recognized me at a different hospital–frequent flyer, yes?

Some fibromyalgia links:

Mayo Clinic
Fibromyalgia Network: Community, Education and Support has this little interesting tidbit that might explain my facial pain:

Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one-quarter of fibromyalgia patients. However, a 1997 published report indicated that close to 75% of fibromyalgia patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.

National Fibromyalgia Association has a good network set up to spread awareness about the condition and also a great page that helps explain the symptoms.

The American Thyroid Association has a PDF booklet available on hypothyroidism.

How many surgeries so far? I thought ten, but when I added them up here, I got eleven. This includes the adenoids removal (1) as a child in fourth grade. Then both feet had neuromas removed (2&3), and both hands operated on for carpal tunnel (4&5). Gastric bypass (6) and later gallbladder (7) removed. Tonsils (8) had to be removed after I ended up with pretty-much a year long sore throat. Tubal ligation (9) and an earlier laparascopy (10) to check for endometriosis, because my one cousin on my dad’s side has it terribly, and it is genetic and we wondered if that was causing some of my problems. I also had to have a D&C (11) the week after Ian was born because I was bleeding too heavily–ladies, make sure the doctor gets everything out when you give birth!

The D&C was the first of the series of the ten adult surgeries, for my health crashed after I gave birth and that is when the fibromyalgia appeared to hit me. In hopes that someday I would work again for gainful physical employment, we started taking care of all four limbs–painful processes, but without them I wouldn’t get around like I do now. Then we started trying to cope with the intense female pain I was having, and the rest of the surgeries came after that.

The last one was the gallbladder removal, at Indiana Regional Medical Center soon after we moved to this area. That one was kind of funny, in retrospect and only because I have a warped sense of humor. My former family doctor in Altoona had sent me to an orthopedic specialist because I was having pain near my shoulder blade, but when I got there, that doctor started asking me about stool color and said I needed to see my new family doctor because it was probably my gallbladder. It was, and apparently the stones had been growing for years–at about the time I moved out to Western PA to get married I was going through a battery of tests for pain in that region but they found nothing. Guess it just took these years for them to show. Who knows? All I know is that because of the delay in diagnosis, having to bounce between four different doctors in western PA (and about two in eastern PA years ago) I ended up getting surgery during one of the first few weeks of school that I had upon returning to IUP as an adult. I had to get a cab or have my mother-in-law drive me to school for a few days because of the pain killers. Felt like a little child! Such is life. But you can understand my frustration with my current battery of tests, yes? Actually, the fact that it is the same region is what is making me apathetic and so used to the pain, I suppose.

I’ve gotten to the point where I start to believe it is best to just forget the pain and get on with life as best as I can. I realize there will not ever be a day that I do not live in pain, so I just make the best of it. I used to let my pain keep me in bed all the time, watching hours of TV on Lifetime and A&E Mysteries, but no more. I can’t do all that I want to and have nights like now that I want to do something besides play on the computer–like do housework or cleaning–but the pain level is too great for physical activity and this is the highest level of concentration for me right now. Maybe in a little while I will be able to focus on my grammar text book, but not right now. I need to get his out first to help me control my thoughts and fight the pain that tries to destroy my life even as it gives me the courage to do what I now believe God wants me to do–write, write, and write some more. I believe He gives me pain so that I will do as He bids and not as I want to do, like maybe try to be a musician if I had use of my hands or spend my time perfecting my skills in a factory again. He gives me pain so that I will be able to have a common ground with others who suffer like I do but have not been given the writing gift that He has given me. He gives me pain so that I might endure and suffer and come out the stronger for it and reach out and comfort others that also suffer like me and give them hope that they too can battle the painful demons that beset their lives.

Or that’s what I tell myself to help me cope with the pain. Another thing that helps me cope is remembering that there are others who suffer way more than I do and what I am going through is just a pittance next to their suffering. So I have all those ailments–so what? I do not have HIV or AIDS, I do not have cancer, emphysema or any other awful problems that I could have.

Speaking of genetics, my generation of our large Pennsylvania Dutch family on my mother’s side is plagued with autoimmune diseases, like rheumatoid arthritis, thyroid problems, and others. My one cousin, whose brother has multiple sclerosis, I am following in the footsteps of with the degeneration of diseases. First she had the Graves’, then I had it. We both had the carpal tunnel surgeries around the same time. Then I was diagnosed with the fibromyalgia she was already pronounced with. What I am terrified about is that I will get the lupus that I believe will kill her, for her body is having too much trouble coping, causing her heart trouble and all other issues that are happening to her rapidly degenerating body.

Her brother with MS is I think a year older than I, she is about a year younger than me, and my sister is the youngest of all, and she gets migraines something awful. We are the youngest four of twenty-two grandchildren, and we are not the only ones of our generation that suffers like this–at least four others I can think of have some sort of problem, like the Sjogren’s syndrome my cousin also has. Our parents’ generation is relatively healthy, mostly a couple of survived bouts with breast cancer, thyroid issues and carpal tunnel, arthritis, joint problems and other serious issues but next to their husbands, who keep dying of cancer or heart trouble, these women are healthy beyond belief next to their children. There were eight children of my grandmother, six daughters and two sons. The one son died when I was little of some nasty disease like Lou Gehrig’s, can’t remember which one, around the time my grandfather also died, I believe of cancer. The remaining son was buried last Friday, of cancer and heart and lung trouble I believe.

On the Wednesday before, October 24, my grandmother turned 95, having been born in 1912, the year the Titanic went down. I can’t imagine what it must be like for her to have lived so long and have buried both her sons already. She can’t remember me when she sees me, for even though she is not diagnosed with Alzheimer’s per se, she gets befuddled quite easily and remembers very little of current times–mostly remembers the past clearly.

I spent about twenty minutes with her, while she played peek-a-boo with my shy-acting son, before I realized she had no idea who I was! One time she asked me if I went to school with one of her daughters! I could barely stand not to cry! She’s one of the most important people in my development, even though I keep forgetting that by seeing her as she is now, knowing that she doesn’t remember it, but I remember her. Such is life. She lives in me, does she not?

I am starting to have trouble typing, so I suppose it must mean it is time to close and try again to either read my grammar text book or sleep, if my body will let me. Sorry I vented so–not sure if I want anyone to read this, but if someone really wants to know what is behind my missing classes, parties or other appointments, this is pretty much why. I have a body that doesn’t let me do too much that I want to do.

I would love to have the energy just to clean my house right about now, for the dishes have been on the counter for a month that I have been too busy or sore to do (plastic hand-wash, rest in dishwasher my husband has to hook up to the sink because my hands cannot manipulate the hose to the faucet), clothes are piled up on furniture waiting for me to put them away, papers are piled on tables and chairs waiting for me to sort through them, my son’s toys are all over the place, books are everywhere, my husband swept up the cat fur but I still have to do the hard floors soon . . . yes, so messy, even though it is not in my nature to be this sloppy, for I am hyper-organized in desire of how I want my house to be, just can’t do what needs to be done right now.

I am praying Thanksgiving vacation goes well for me, and I get some stuff straightened up so it doesn’t look like a pig-sty! (It’s good my mother lives six hours away!) And all this is why people do not come here to visit, for this is where I hide to recover the strength to go out into the world again, and I am too embarrassed to let them see my messy home. We just got new neighbors that we see every morning when they put their son, same age as mine, on the school bus, but I haven’t gone over to talk to her yet because I keep having to run back in the house for more sleep, and too ashamed to have her in the house now. Maybe I will get a lot cleaned up over winter vacation, and next semester I can have visitors? Who knows what the future will bring?

Again, sorry for the whining, but if you read all this you either really care about me and getting to know and understand me, or you have these problems yourself or someone you love suffers like this, too. I had women bawling over poetry I wrote about depression because they finally understood what a loved one felt, and maybe I was able to help someone today with all I wrote here. There may be a purpose to what I write–maybe the Holy Spirit still does speak through me even though I am no longer a church-goer. My husband will be uncomfortable with this entry, as he was about my entry for mental health, but I feel this is part of my purpose in life, to use my experiences to help others.

And I must rest and recharge, somehow, someway . . . I have a date with my son today for cultural awareness on two fronts–first a Native American Awareness month program, then India day Diwali celebration. Hooray! I have so much studying to do, but I am so excited about spending time with my son that the rest will have to wait. He will get credit for his Wolf Scouts for both the Native American cultural research and seeing the other show, but most of all we will be together!

Oh–side note here, I am counting this towards my NaNoWriMo for the day, because most of what I wrote was in character for what I am putting in the novel. I love when there is more than one reason for everything!

~ by maralorelei on November 4, 2007.