A Journey Through Pain; A Hope For Tomorrow

Kathy Skow

My story

It was back around 1987 that I had noticed some changes that were happening in my arms and hands. They were going numb on me all the time. My primary care doctor sent me to a Neurologist to see why I was having so many problems.

I went and they did the normal things like hit your elbow and you legs and yes they did move but not by much. I was also complaining of a dull aching sensation sort of like the flu all the time. The pain from all of that was terrible. There were blood tests drawn and the tests did show some abnormal results. Since the Neurologist couldn’t really pinpoint anything down due to my nervous system he sent me to a Rheumatologist Arthritis physician.

Once there he drew some more blood tests and did his exam. He had me make another appointment for one month after placing me on plaquinal an anti-malarial medication to start for with my treatment. Man did that make me sick but I kept on taking the medication as directed. I had started to notice that I was developing yellow patches on my face; which he later told me that was one of the side effects and took me off that medication.

I was still in great amounts of pain when I was on the medication and when I was off so it didn’t really make that much of a difference. When I went into see him he asked me if I had ever had lymes disease which I told him that at one time the doctor thought I might have had it but put me on antibiotics so it shouldn’t have shown up or shown it was a dead virus. He asked if I had ever had any STD’s. Hell no was my answer. As it turned out all my blood work showed false positives to these questions that he had asked and my sedimentation rate was extremely high and my FANA and my ANA came back high and so there was something wrong. He told me at that time that I had fibromyalgia. Not sure what that was at the time since it wasn’t really popular back then and not much information could be found. He informed me that the nervous system is over reacting and they didn’t know why but I was one of the lucky ones that had it. He also informed me that I had RA=Rheumatoid Arthritis. What’s that I asked him for I had no idea what was wrong with me. I was told that it was a form of arthritis but it not only attacked the joints like osteoarthritis but looked at my body especially my connective tissues as a foreign invader and would attack and destroy them. Oh great my body is going to fall a part.

So then what’s next? I was told that all of this was a form of lupus, although I didn’t have the facial butterfly rash across my nose and check areas. Next thought I had was that I was going to die of this horrible illness. He then placed me on methotrexate to keep the RA in check and folic acid to help my body absorb the methotrexate and Volteran for the pain. The Volteran didn’t work so he placed me on another medication that I had never taken before prednisone. This medication he explained was to help my immune system break down the cycle of pain that I was currently experiencing. Sure did make me want to eat and have salty foods. Of course like all the doctors had suggested I should lose weight to ease up on the knees and hip and my back. Easier said than done when your really enjoy eating such good foods.

Me in 1999

In 1992 I was out horseback riding and the horse didn’t like me very well and while I was riding the horse started to gallop out of control and threw me off. Landed on my buttocks and was thrown so hard that I bounced and landed on my hip then finally my stomach.

I had to lay there for a minute before I could even move. I was hurt but my youngest daughter was with me so I sure couldn’t let on just how hurt I really was. I got up and dusted off and riding lessons were over. They say to get back up and on again so you’re not afraid to ride again. There was no way that I was getting back up there with all the pain that I was in. So off we drove home and I told my now ex spouse and told me that I deserved it since I was doing this behind his back and he didn’t want me to buy a horse anyways. Wow what a great guy. Several days later the pain was so intense that I did finally go to the ER. After x-rays and a CSCAN I was admitted to the orthopedic floor.

I had broken my tail bone so badly I was told I could not have anymore children. I also had a compression fracture of the L-5 I believe. The bone was pretty much shattered. The wings of the vertebrae had broken off and the vertebrae itself had fractured. No wonder I was in so much pain. They didn’t say much about the hips or knees. I went through traction and physical therapy so I could walk without causing too much pain.

All this time I was suffering from the fibromyalgia and RA so the pain was even more intense put with the morphine I could put up with it.

The next good thing that happened to me I had to hock my jewelry and sell my piano for the money that I lost while trying to heal. This was all purchased by my inheritance money that I was left from when my father died. So it all went away including the new computer that I had purchased just so I could make my ex-spouse happy and give him some money.

While trying to heal I kept bleeding thinking how could I have my menstrual cycle like every two weeks. This was in 1993 or 1994. I had to have my bladder rehung…lol…so at the same time my doctor bless his heart gave me a total hysterectomy meaning that he also took my ovaries. Lab reports came back as having endometriosis. So it was a good thing that he did that or my entire body could have been filled with endometriosis. Within five weeks of that my knee started locking and I wasn’t able to walk forward down the stairs there was so much pain. I went to see my Orthopedist. The cartilage in my knee was slivering off do to the fall off that horse, so had arthroscopic surgery to fix that.

I found it hard now to go back to work. Being a medical assistant and having to bend or lean forward to assist the doctors just killed me and my back hurt so badly I had to take a different type of job where there was less pressure on my back or so I thought.

I had quit taking my RA meds as I was in a remission at the time with some of the fibromyalgia aches and burning and feeling like I had the flu but it was manageable with Nsaids. So I lived pretty normal for quite sometime. I still battle my depression which I have had since I was in my teen years very early teen years. So that was about the only medications that I wouldn’t go without. During the time of remission was fantastic. I went through my divorce and found a person that I stayed with for four years. He was abusive emotionally and mentally. He was very insecure but a know it all. I got so bad I put myself in the hospital where with the depression I had they gave me ECT treatments. (Electroconvulsive therapy) This is where they shock your brain to send the neurons’ flying again with hopes this helps the depression. It did for a while but after about 20 of them and loss of a lot of memory I stopped.

At this time the fibromyalgia and RA became active with a vengeance. So back to the doctor, now this was in 2005. So I was put back on the wonderful methotrexate, folic acid, and 800mgs of Ibuprofen. Wow would this take care of all this pain…hell no didn’t even touch it. My primary doctor then recommended a pain clinic since I was in so much pain all the time. They put me on Mscotin (long acting morphine) 30mg three times a day with Vicoden 5/500 for any break through pain. After about 5 months it was decided that I was an addict and was taken off the medications totally. I went through withdrawals at home and let me tell you I thought I would die it was so bad, I know I could have had many seizures but was already on seizure medication so that really helped me escape that part of the withdrawal. That was undoubtedly the worst thing that I had ever been through in my entire life. But now I had the wonderful label of “addict-abuser” thanks to my son who would help himself to my medication without my knowledge.

I now in full blown Fibro and RA with flare after flare had been in tremendous amounts of pain and a lot of frustration not being able to get what I needed. I think we all have been there or are there now. I have been on a steady diet of prednisone with so many other medications to try to stop the progression of these horrible illnesses. With the headaches and back pain and my hips and knees hurting so badly the depression got worse. With all of this going on and the doctors trying to send me to pain clinic personnel that wouldn’t listen, the frustration grew. I was working but calling in sick due to pain and depression. First was a tonic colonic seizure or grand mal that kept me out for about 6 months. I got back to work the next thing to happen beside the illnesses was I developed pancreatitis. There was another week in the hospital. Got out and the acute pancreatitis returned and back I went for another week. No wonder I hate hospitals so much. Things were going fine but still having what they considered as minor illnesses and calling in sick they finally let me go. The flares still not going away with all this stress and different things going on in my personal life the pain was there and Nsaids were just not working. The next wonderful thing was I was told that I had Sjogrens Syndrome. Sjogrens is a cousin to lupus acting the same way without the butterfly rash. It still attacks the body but just loves to dry everything out for example your eyes become dry and gritty, having a dry mouth is very another clue even though medications can cause this with the dry mouth comes tooth rot. Your skin is very dry and the vaginal area is drying causing painful intercourse. This illness also attacks the body no wonder I now have chronic pancreatitis. With these illnesses they all can attack your heart, lungs and other major organs of the body.

I then contracted bacterial pneumonia. Oh was I sick. There was another 2 weeks in the hospital. With having abnormal blood tests and the scare of the H1N1 they wanted to hold me till they made sure that I didn’t have that. I couldn’t even walk outside my room. I ended up there twice since the pneumonia wouldn’t go away. My primary doctor wanted me back on some heavy antibiotic IV therapy which they gave me for one day. By the third day I was set free to go home. My doctor wasn’t too happy with this cause now I would have to try different antibiotics at home to kill these bacteria. I did get better but it was a long haul of 4-5 months.

Now today I have pain which varies from day to day. I am exhausted just about everyday and have to nap to make it through the day. After two long years my primary doctor finally gave me some pain pills. They aren’t very strong as he wants me to feel the pain of my pancreatitis if it should flare yet again and still. Sorry to say there are no pain pills that will kill or stop that pain. We have an understanding of what needs to be done to continue on getting my pain pills and so far so good. At least even at a low dose it does help sometimes to take the edge off. Oh I did lose all the weight I was told to lose. I can’t imagine what kind of pain I would be in if I hadn’t lost it. I had gastric bypass and lost approx. 160-175 pounds. I was at the 300 lb mark. At least the threat of hip and knee replacement that I was threatened with in the 90’s telling me that I would have to have them replaced by the time I was 40 elongated for years to come. I am now 53 and have a lot of pain in those areas but they are the originals.

If you have questions for me just ask. I am an open book. Nothing I won’t answer for you.

Kathy